Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> Support and Encouragement >> anaphylaxis http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1315038547 Message started by Anaphylaxing on 09/02/11 at 21:29:07

Title: anaphylaxis Post by Anaphylaxing on 09/02/11 at 21:29:07 Had anaphylaxis 12 weeks ago (tongue swelling, rash, short of breath) to x-ray dye, biphasic then protracted. On 5 antihistamines, 2 mast cell stabilizers and steroids still with some symptoms.Dont know if this is IA or MCAD. ALso now having trouble getting off steroids--?Adrenal insufficiency? Recently switched from prednisone to hydrocortisone. So afraid, don't know what's going to happen. Has anyone experienced this? Miss my old normal life.

Title: Re: anaphylaxis Post by Joan on 09/03/11 at 17:39:39 Yes, I've reacted in a similar manner to certain things, like CT contrast.  Of course you miss you're normal life!  It's hard to go on when you know something's not right, and it can be frightening, too. There are a few questions to answer before anyone can give you any real advice, such as what tests have been done on you?  What meds and dosages are you taking at which times of day? Regardless of whether it's IA or MCAD, your mast cells are all fired up and over-reacting.  Until they calm down and stop degranulating, you're going to continue to have these symptoms.  I suspect you're still under-medicated, even though it seems like you're taking a lot of everything.  I like gastrocrom a lot.  Anyway, if you post the information, someone will review your meds and let you know what he/she thinks. If you're not taking probiotics, it might be a good idea to consider them.  They do help to normalize the immune system.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/03/11 at 21:10:25 Lisa, Thank you so much for replying. Did your reaction go on this long? How long did it last? How long did you need steroids? I live in an area in Canada where no one has ever seen a reaction like this and they kept expecting it to stop or thinking it was in my head. It was a combination of my own research and cries for help via email with a good family doctor that got me on the meds I'm on. I just have no idea what to expect from here on in. I was told the IgE tests could give a false negative while I'm on steroids. As far as I know there's no IgE test for Iodine, but I will have the shellfish done. My tests have been otherwise negative. (Tryptase, urine histamine etc though done long after the reaction). I just feel like no one understands and even my family is starting to think I'm crazy.  I hope the symptoms will stop someday. I'm still getting chest tightness, occasional rash and GI upset. And, now they think  my adrenal glands might've failed because I didn't tolerate the last steroid taper, so I'm getting scary symptoms from that too. I haven't had the carcinoid work-up as I was essentially asymptomatic prior to this, but maybe I should have it done.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/03/11 at 21:14:09 Oh sorry, I'm on ranitidine 150 mg PO BID, reactine 10 mg BID, ketotifen 2 mg BID, Cromolyn 200 mg QID, Hydrocortisone 20 mg AM 10 mg afternoon, singulair 10 mg OD, pulmicort,

Title: Re: anaphylaxis Post by Joan on 09/06/11 at 18:14:29 It's important to rule out several disorders/diseases with similar symptoms, such as carcinoid syndrome and pheochromocytoma.  Once those are ruled out, I would recommend you find a mast cell disorder specialist and make an appointment.  You can check under the doctors topic and see if there's anyone near you in Canada, but you may need to travel quite a distance to find someone knowledgeable.  It'll be worth it! I think you might be under-medicated if you're still having so many break-through symptoms.  If you can get Allegra (fexofenadine), you could try that.  Most MC patients take 180 mg. once or twice a day.  Some alternate Zyrtec/Reactine (same thing) with the Allegra.  I take Allegra in the a.m. and Zyrtec at night.  Also, 30 mg. of a steroid/day would be an odd dose in the U.S.  If the symptoms are extremely bad, we would be started on 60 mg. and then taper down over a longer time, such as 60-60-40-40-30-30-20-20-10-10-5-5-off.  50 might be put in between 60 or 40 if the doctor wanted a longer taper. A very important thing to do is to look up the low histamine diet (at the ICUS website) online, and stick to it religiously.  Foods can be a really serious problem.  Some are high in histamine or can cause direct mast cell degranulation, such as tomatoes, eggplant, fin fish, spinach, pumpkin, pineapple, and many more. The ICUS list tells you exactly what foods you can eat and what to avoid.  Leftovers are a serious problem, especially meats, as the bacteria in them produce histamine in a very short time.  If you freeze leftovers immediately in portions, you can thaw them out whenever you want them.  Stay on the diet for at least a month and then you can try to add back one food every few days to see what does and doesn't cause you to react.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/06/11 at 21:25:50 Thanks! I did start at 60 mg prednisone as a tapering dose after being in hospital for 2 weeks. I failed the first taper, pulsed again, got down to 5 mg but couldn't go lower due to? adrenal insufficiency. So I've recently switched to hydrocortisone hence the strange number.  I did try the low histamine diet for 2 weeks and nothing seemed to change. Has anyone ever had a reaction go on this long? Im at 13 weeks since the anaphylaxis.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/06/11 at 21:27:23 Joan, I just realized that I called you Lisa, sorry! How long did your reactions last?

Title: Re: anaphylaxis Post by Joan on 09/07/11 at 14:22:28 Each reaction lasts/lasted about 20-30 minutes, except one time when it was 2 hours, and I needed epi and steroids.  Of course, I take H1 and H2 antihistamines immediately when I feel it coming on. When a person takes steroids, the adrenal gland shrinks down to about the size of a pea.  It takes a while to rebound.  It could be you need a slower taper.  Or, you need more antihistamines.  You are not on a maximum dose of several of your meds.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/07/11 at 21:28:42 Yes I am currently trying a slower taper. But still have occasional flushing, rash, chest tightness...did that ever happen to you this long after your initial reaction (12 weeks). That seems to be the part that's baffling everyone.

Title: Re: anaphylaxis Post by Joan on 09/08/11 at 10:31:16 I'm thinking this isn't one long reaction.  I wonder if your mast cells have become "twitchy" and may be reacting to other things in your environment, like mold or pollens or foods you're eating or stress or just because they feel like it.  Sometimes there's no way to know. If the antihistamines and steroids aren't helping, then I would look elsewhere for a diagnosis, in addition to ruling out mast cell disease.  Have you been allergy tested?

Title: Re: anaphylaxis Post by Anaphylaxing on 09/08/11 at 20:23:23 I was tested in the past (cats, birch tree, pollen positive) with skin prick. And had blood test and was negative to Latex and food mix but was on steroids and apparently need to repeat that test once off. Can't have any skin testing because I'm sensitized, I have dermatographism and pressure urticaria off and on throughout the day. My tryptase and urine histamine were normal a couple of weeks after the initial reaction. I just hope I can manage to get off the steroids and still manage the symptoms. The symptoms I have now are liveable. More of just a nuisance the level they're at compared to what I've been through.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/08/11 at 20:25:41 I think the meds are dampening things for sure. At least these are no where as severe as the reactions I had during the anaphylaxis.  Stress definitely makes me more flushed, itchy and skin reactive, so I'm trying to stay as calm as I can. I might be trying a small steroid taper this weekend. I'm nervous!! I find the biggest changes are in my heart rate and palpitations whenever I change the steroid dose so I'm hoping not to notice this one because it's such a scary feeling!

Title: Re: anaphylaxis Post by Joan on 09/09/11 at 18:02:55 You might want to tell your doctor that you'd like to taper slower.  With mast cells, sometimes you have to "come in under the radar" in order to keep them calm and quiet.  If they want you to reduce by 10, tell them you'd prefer to reduce by 5. If that doesn't work, try 2 1/2.  Hope that helps.

Title: Re: anaphylaxis Post by Susan on 09/10/11 at 10:34:08 Hi Anaphylaxing, So sorry to hear what you are going through! I just wanted to say that I have experienced the long term reactions you seem to be having. I am a leaker.  My mast cells over produce all the time, but I rarely have a full blown anaphylaxis episode. When I have a bad exposure to something I react to, I will stay over stimulated for some time. Recently I had an endoscopy, and I reacted to the tubing put down my throat. I had to increase my meds for several weeks to keep reactions like chest pain, tachycardia, and throat swelling from overwhelming me. This is even though I was pretty well stabilized when I had the endoscopy. I had to take Zantac 300 mg 3-4 times day, Zytec 10 mg 2-3 times a day, benedryl as needed, and I also take ketotifen 2 mg 3 times a day, and Singular 10 mg once. I haven't ever taken prednisone, because I have infections that make taking it dangerous. I agree with Joan that you need to reduce the prednisone very slowly. Right now your immune system is depending on it, and as you go down in dosage, it makes you more vulnerable. You have to give your adrenals time to kick back in. I hope you can get to a stabilized place. Just the other day I suddenly realized that I am doing MUCH better than before I started treatment. It seems that over time your body recovers more and more, and it can be hard to notice how much you are improving. For the stress, I recorded a bunch of calming music on my MP3 player. I played it almost constantly at the beginning. Now I am like Pavlov's dogs, the music has to just start, and I calm down. There is even good studies showing how music can stimulate healing. I would just use it to shut out all external stress, and even my own thinking. Take care!

Title: Re: anaphylaxis Post by Anaphylaxing on 09/11/11 at 17:11:24 Susan, Thanks so much for replying. It is nice to hear that you've been through something similar. How did it all start for you? Do you have a diagnosis? MCAD? Did you ever have any lab abnormalities? I just hit the three month mark and I am happy that I am still alive and am starting to live a little, but am definitely not myself/can't fully function. One of the biggest issues right now is tachycardia--which I see you mentioned. When I stand up my heart rate goes to 110-120. I can get it to come down if I walk around slowly to 90s, but if it's too hot out I can't get my heart rate down and feel like I'm going to pass out. I don't know if this tachycardia is my lack of adrenal function, persistent allergy or what! But, the good thing is, since I've switched to hydrocortisone I have more energy. I started at 30 mg and yesterday dropped to 25 mg and am still doing well other than the tachycardia. The plan is to try another 5 mg in 5 days if I do well. I REALLY hope I can get off these steroids. Susan do you have to take medication all of the time or only when you have symptoms?  I'd love to hear more about what you've gone through as no ones seems to know much about this. Did you find doctors who are knowledgable? Did you find you were really scared of everything for awhile? I'm afraid to eat things or go places in case I flare-up. I get occasional chest tightness and itching right now but much better than it was. Joan, thanks for the slow taper advice. I've been okay with this 5 mg drop but if that changes I will go back up and try 2.5 the next time. I  am SO terrified the first day of my taper. Great to hear from all of you!

Title: Re: anaphylaxis Post by Susan on 09/11/11 at 18:15:23 I've been quite ill since 1993. I was working in an office where they replaced carpets and painted, but had no ventilation. It was really bad, and I had to quit. I started reacting to all kinds of chemical exposures then, and for a while was bedridden. I couldn't leave the house, or go shopping for over six months. When I went in a grocery store, all I could smell was dead meat, rotting vegetables, and pesticides. I would faint when getting up from sitting or lying down. I had rashes everywhere, and my eyes were swollen shut. Over time I have been able to manage things by controlling exposures, eating well, and they found I had Lyme disease. So they have been trying to treat things as they came up, but no one understood about why I was so sensitive to odors and chemicals, and why I just couldn't get well, even when treatments helped. Them about three years ago, they did some painting at work, and I was exposed to paint stripper. It just knocked me back down again, and I couldn't seem to recover. I had severe shortness of breath even when resting, and tachycardia almost all of the time. I was again very reactive to almost everything, and unable to go much of anywhere. I went through the diagnosis run around again, and I was told I had exercise induced asthma (walking into the living room would trigger it!) and a Patent Foramen Ovale (opening in my heart that lets used blood mix with the oxygenated blood that is being pumped out to the body.) But even with the new diagnosis, I wasn't getting better. I started having swelling in my throat and trouble swallowing. Finally I had an event a few months ago where I was afraid I was not going to be able to breathe. My doctor told me to go to the ER, and they said it was an allergic reaction. I got an Epi pen and a referral to an allergist. The allergist tested me for a lot of allergies, and a few screening tests for mastocytosis. By then, I had started taking the antihistamines myself. I found that they helped quite a bit, but only at a high enough dose. My throat swelling stopped, and my tachycardia and shortness of breath backed way off! The allergist told me that I did not show positive on any of the tests for allergy, and my tryptase test was negative, so I didn't have mastocytosis. He didn't know why the antihistamines helped, but he didn't even want me to come in for follow up appointments to find out what WAS going wrong. Fortunately, I also had an appointment with a GI doctor who was looking into the trouble swallowing. He did a number of tests, including an upper GI biopsy. That showed an elevated number of mast cells, and none of the other things he expected to see if it was something other than masto. He diagnosed me with mastocytosis. I think technically, I still would need a bone marrow biopsy, and possibly some other tests to prove systemic masto, but for now, this is good enough. I have an elevated number of mast cells, and I respond to antihistamines and mast cell inhibitors. The doctor who has been treating me for Lyme is very open to learning new things. He rx'd the ketotifen and Singular, and the GI doctor agrees that I should be taking all the antihistamines as well. Forever. I was amazed, when starting these medications, to find out how much they helped with. Some things, like my GI pain, was so constant I didn't really pay attention to it until it improved. Then I realized how much it has been wearing me down. The chest pain that everyone thought was heart issues has gone away. Terrible rashes that never cleared are almost completely gone, even the scarring. I'm not 100% yet. I have been pretty sick for a long time. But I feel more hope now than I have at almost any time, as I see the improvement continue, slow but sure. I hope you find that your reactivity goes down, as well. I did have to be very aggressive about taking something whenever I reacted. To not let it get away from me. And I don't have anaphylaxis often, so that helps. But many others on the board have also seen major improvements, so let us hope that will be your case as well!

Title: Re: anaphylaxis Post by Lisa on 09/12/11 at 06:24:05 Hi "Ana"   I´m glad to see that you´re improving.  Sorry I´ve not gotten on earlier, I´m still dealing with work and computer issues so it´s kept me with only a few moments to be able to hop on here.   I´ve got a history of very severe reactions to contrast.  I´ve gone into anaphylaxis upon injection of the contrast and so I understand what you are talking about.  From this day forward, you can not and must not go through any contrast injections without specific protocols guiding the doctors as well as premedication for you to take ahead of time.  You also need to do this in a hospital setting or in a clinic which is annexed to a hospital and have an anesthesiologist called in!   Why all the fuss?   Because whether you have masto or carcinoid, the fact that you have reacted shows that you have some kind of disease of proven allergy to the contrast which means you will always have this potential to react.  It´s not going to go away.  However, with the correct precautions and procedures, using these protocols, you will be fully protected if you are either an allergic patient and a mastocytosis patient.  I am not certain how a carcinoid patient would respond, however, I do believe they would do well with it.   I will ask my oncologist as to his opinion on this for he´s an expert in carcinoids.   Now as to the continued reacting, this sure does sound like masto, but then I don´t know if carcinoid patients do this or not, so don´t go by this statement of mine.   Yet, regardless if you are masto or carcinoid, both patients do indeed have allergic like reactions due to their disease and they both take antihistamines.   The continued reacting needs dealing with and you need to be taking antihistamines both morning and evening and with these you will finally deal with the reacting.  However, 3 months is not continued reacting, Ana.  What most likely happened is that you´ve had the disease dormant and in hiding and the contrast woke it up and brought it to the forefront.  This is not at all unusual for either masto or the carcinoid.  My oncologist told me that he´s heard of this happening with carcinoid patients and it was Dr. Akin who told me that these kinds of procedures can pull masto out of hiding too. In fact, it was surgery which pulled my masto out of hiding and boy was it angry when it was woken up - I´ve got a really cranky case of masto and it came roaring to life!  I can litterally tell you the day it woke up and it´s like I had my doctor play Frankenstein with me and he gave me some other woman´s body with his surgery!!!  That´s how violent and drastic the changes have been!  My doctors have been shocked to see the changes!!! So, what it sounds like to me is that you are not still reacting to the contrast.  Instead, you are seeing the actual disease at work and since you are not properly medicated, this is what life is like without medicine!   I went through 6 full months of constant reacting until I finally found my oncologist and he gave me Allegra as an emergency medication which I used only when I went into a crisis.  Yet it was my husband who saw how much it helped me and he is who suggested I take it every day.  But it took another year before I found my masto doctor and she doubled my meds and gave me more stability, but it took another 18 months before I was finally put on the right amounts and meds and got some stability. So, this is what I think your situation is, Ana, and that until your doctors can figure out some things, you are going to have to be patient and try to work with them.   It would do you no harm to try a few over the counter antihistamines like Allegra.  And since you live in Canada, if your doctors are able to pin it down to masto or even allergies, then Ketotifen is available to you and they should put you on this ASAP, for it is one of our mainline meds. I hope this helps! Lisa ps - the REMA protocols are here on our site and you can search and retrieve them without any difficulty.  Give them to your doctors. I´ll get back to you if my doctor replies to my question.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/12/11 at 18:14:29 Thanks for the replies! Lisa--I am on ketotifen, cromolyn, reactine, ranitidine, singulair and hydrocortisone. I'm really hoping to get off the steroid soon. Are you able to lead a normal life now, or what daily meds do you take? It is good to hear that you've had things go on this long, but does scare me to think I have an underlying mast cell issue; though I presumed I did given that they're totally out of control, I guess it was just a bit of denial. My tryptase was normal but it was a couple of week after the anaphylaxis. My urine histamine is also normal. I hope I don't need a bone marrow biopsy. . .I wonder if the normal labs makes it more likely MCAD than mastocytosis. I have not had the carcinoid screen done, but I guess I should. Susan--WOW you've been through a lot. I really hope things are starting to come together for you. You are all so brave and positive to endure all of this. I had NO clue how debilitating allergies etc could be before this. Don't worry I will NEVER get contrast again. A problem though is I used to encounter it in the workplace quite frequently and so I"m having to re-evaluate my work. My sister has been battling reactions to smells etc and I worry this is all staring to come together with us both having mast cell issues. Thanks for all of the help.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/13/11 at 12:00:52 Also, I'm supposed to be moving and am getting a lot of pressure to do it soon. I've been apprehensive and wanted to get control of my symptoms here, but if I were to, do you think flying or driving is best? It would be a 3 day road trip with lots of being hours away from civilization, but what appeals to me about driving is that I can control the temperature (which seems to really set me off), stop etc. Flying is faster and I'm maybe closer to medical treatment but is more stressful and I can't control the plain temperature or get off if I'm feeling sick. I'd appreciate knowing your experiences.

Title: Re: anaphylaxis Post by Lisa on 09/13/11 at 16:02:19 Hmmm, where to begin!   ;) I know that when you read the generalized information out there that the idea of being sick with a chronic illness seems horrifying!  And when you read what some of the artlcles say especially when it talks about the aggressive side of mastocytosis, then it's easy to freak!   Listen, the truth about a mast cell disorder is that it's really mainly a MAJOR PAIN IN THE TAIL!  We are patients whose bodies have suddenly or gradually become INSANELY ALLERGIC and we live battling the triggers which make us miserable.  The vast majority of us will not incurr major damage nor will we die from this disease and most likely we will die from something else instead.  This is the truth about masto. Now, to balance this, we do go through a lot!  And when we are not properly medicated, life is truly miserable for we are constantly sick then!!   Some of us go through anaphylaxis as well and that means that we have a "dark side"  to our illness for anaphylaxis can kill.  But once you've found the right answers and are properly medicated, then there's no reason why you can't have your normal life back.  You will always have to live with limitations and extra considerations, but the majority of us manage to life a pretty normal life.   What kind of limitations?  Well, it depends upon your body and how you react.  I've faced the facts, I'll never be able to enjoy the sports I used to enjoy because excercise is a major trigger for me.  It's hard for me to go swimming because if the water is too cold, it will trigger me.  I must watch my sleep and certain foods I eat and I must not go out into the heat and must always consider if where I go has air conditioning or if it's way too hot for me to leave my home.  These are my major limitations.  However, when I look at the life that other  people who have chronic illnesses face, then I consider myself incredibly fortunate for we are not allowed to choose our illnesses - nobody asked our permission.  So, if I had to get stuck with a rare disease, masto, in truth, is not one of those which cripples you for whatever is left of your life!  It mainly means that you have extra work on your hands, making plans and preparations and adjustments in order to keep from triggering.   So, from one patient to another, don't get overly frightened or concerned about what you read in the literature.  They are describing worst case scenarios and the vast majority of us do not fall into that category - thank God! It is indeed possible to have a mast cell disorder with a normal tryptase.  Mine is normal and yes, I do have an MC disorder.  This normal tryptase is VERY GOOD for it shows that the form of the disease that I have will not cause major damage to my tissues.  It doesn't mean I'm not sick with the disease, it only means that the form of masto which I have isn't one which does a lot of invading of the different tissues.  A very good thing! If your tryptase and histamines are normal, the most doctors would not do a BMB.  They might consider it if you have a lot of symptoms and anaphylaxis.a As to looking for the carcinoid, this may indeed be necessary and there are other disorders which also compete with mastocytosis so seeing a hematologist as well as a specialist in carcinoid may be the thing to do, for what may seem like anaphylaxis to you could be some other kind of crisis event. As to moving, it depends upon where you are going to?  Are you in the States and are you horribly reactive to smells and things for although driving may seem more attractive, if you are the one doing the driving, it's a lot of stress to your body, going for 3 days straight.  Also, you have to consider the staying in hotels/motels.  Some of us are insanely allergic to smells and perfumes and if the hotel uses some strong cleaning detergents, this is an issue.  If you fly, many of us pre-medicate for the stress of any trip can be enough to put us into anaphylaxis, so by pre-medicating, it helps to keep us from reacting.  And, if you are pre-medicated, the chances of getting sick are greatly reduced, so it proves to be, at least in my opinion, a more attractive option due to the speed and lesser amount of stress.   Yet, if you want help to look at the plus and minuses, let's keep talking this out until you find a decision for how you want to handle it. I hope this helps! Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 09/13/11 at 19:00:48 Wow, Lisa Thanks for taking the time to reply. You really have a great handle on what seems like such a mystery to me right now. You raise a good point with the motels. I haven't noticed that smells bother me. I would not have to drive. But heat and any stress do seem to get to me--I was presuming the heat intolerance was an adrenal issue but maybe it's a mast cell issue. I'm still having tachycardia when I stand up. I used to workout 6-7x/week and now I can barely walk across my home.   I find flying stressful at the best of times. With being on so many steroids and antihistamines i'm not sure how I would premedicate other than by increasing the steroid which I'm reluctant to do because it's been such a process coming off. They want to do an ACTH stimulation test on my adrenals, but it required an injection and I just do not want anything done to me until I settle down because I think it will just trigger more trouble. I'm supposed to go to Portland, Oregon. Just tonight I had tiny itchy bumps all over my arms and legs which I guess I can live with but just brings me down. This all happened a week after I got married and it has been so devastating. Will I survive? Will I ever be able to have children? Sorry, it's just all so new to me. I don't know all of my triggers or how to cope yet and I have no idea what's ahead.

Title: Re: anaphylaxis Post by Lisa on 09/14/11 at 02:24:58 When looking at your symptoms through the light of a mast cell disorder, things do appear that you could indeed have one.  In that light, as to your marriage and having children are concerned, you do not need to fear!  You can indeed have children and the doctors can help make sure they are healthy and well.   As to your marriage this is another thing.  My being sick has indeed tested my marriage of 20 something years, but instead of pulling us apart, it has brought us closer!  Marriage is something that is independant of your illness and marriage is always a work in progress regardless of whether you are sick or not, whether you have children or not, whether you have financial problems or not  - regardless the things that are outside of marriage, there will always be challenges to overcome.  Depending upon how you face those challenges and your attitudes in dealing with them it will either make or break your relationship with your husband.   I had a friend once who counselled me before getting marriage with some excellent advice.  A GOOD marriage is that of each partner seeking to outgive the other partner.  In other words, even though you may be strapped with problems, if both of you work with this motto in mind, that of trying to give of yourself more than the other gives of him/her self, then you both will be working towards the same goal of sacrificing for your marriage.   Conversation / Dialog is the KEY to a healthy and happy marriage and the more the two of you are able to sit down and LISTEN and SHARE with the other, the deeper and healthier your relationship will be and this disease won´t pull you apart any more than children or in-laws or financial problems or whatever else comes your way will do!   So, although I know you are fearful for your life and your wellbeing with one another, there is no need to be so.   Yet, what is most important here right now is FINDING A DIAGNOSIS!!! What state are you moving from to go to Portland?  I´m wondering if you happen to be living near a masto specialist without knowing it!!  At this moment, I´m unaware of a masto specialist up in Portland, however, my doctor, down here in Brazil, just met up with a couple of doctors who are from Portland and it may be that I DO have a doctor for you.  I´m going to email my doctor and ask her, but it´s going to take a little bit to get an answer from her because she´s due to head to a conference in Mexico.  Yet, there is a slight chance that I do have someone up my sleeve who is vaguely familiar with masto, so give me a couple of weeks and I´ll see what I can do to help you.    What you are needing is a doctor who can INVESTIGATE you and not just consider isolated problems like adrenals.  The tachycardia is indeed an issue with us and when we react, it puts a tremendous strain upon all of our systems, including the adrenals.  I end up having a hyperadreneric response when I go into anaphylaxis - I get hypertensive and the MCs cause my adrenals to pump out too much hormones which is what pushes my pressure up.  My body is trying to protect me, but it´s hard on my system in doing so.  So, although the doctors are looking at this in an isolate way, they may be missing the boat completely!!!!   They need to begin considering what is behind it all, and in this sense it could indeed be MCs, but then perhaps not.  You need an INVESTIGATION.   Just to give you some peace, if you do indeed have a MC disorder, BE AT PEACE!!   If you had any kind of aggressive disease, the doctors would have found it by now for that kind of thing JUMPS out at them and screams BOOOOO! :o If your doctors haven´t been jumping through hoops yet, then BE AT PEACE, the chances are you´re not with anything life threatening.  It doesn´t mean you´re not suffering greatly and that you´re not in a bad spot, but it´s not going to kill you any time soon!!   So, this is why you´re stuck going around in circles and not getting anywhere, your illness is not aggressive and therefore not telling the doctors much.  But hang on, be patient, they will eventually find the answers! I hope this helps to encourage you! Lisa

Title: Re: anaphylaxis Post by Lisa on 09/14/11 at 12:54:04 Oh how I LOVE my oncologist!!!   He just gave me a WONDERFUL answer and I think it will even help your doctors. This is what he said: Carcinoid patients should not have reactions to iodine contrast. Maybe it is an alergic reaction, and corticosteroids should work. In an unlikely setting of tumor degranulation with iodine, octreotide 0,5mg SC would do. So, what he is saying is that patients with Carcinoid tumors are not known to react to contrast if it's not a normal allergic reaction.  So this means that your reaction is either a direct IgE allergic reaction to contrast and iodine or it's perhaps a MC mediated reaction to contrast.  However, the chances are against it being a carcinoid tumor reaction to the contrast.   This is really a wonderful reply for it helps your doctors gain insight.  My oncologist is one of the highest authorities on these tumors here in Brazil and he did a tremendous job with me!  He continues to support me due to how hard my case was for him, for he's learning about masto through me and this is helping him to differenciate between masto and carcinoid patients since these two diseases compete with their symptoms.  My case has helped him find other masto patients and he now knows what to do with them since my case taught him so much.  This is why when I'm trying to help patients here, I run to him regarding questions about the carcinoid tumors and the way the patients react to things.   Since the carcinoid tumor is much more threatening, it's important to rule it out and every little bit of help is good. So, if you send this bit of information to your doctors, it may help them.  If they should wish to speak with my oncologist, I'm sure he'll be more than happy to help them.   However, I also have the contact information for Dr. Richard Warner, one of the highest authorities in carcinoid tumors in the States and I'm sure he'd be happy to help your doctors as well. Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 09/14/11 at 15:23:16 Lisa, You truly are an incredible person for helping me and everyone else they way you do. Your words of encouragement have meant so much. I find it hard to take encouragement from the doctors who aren't sure how I'll do, or the healthy people around me, but you have been through so much and are so positive that I can't help but be encouraged.   I am psyching myself up to travel in the next few weeks hopefully. I think I am leaning towards the car because scents etc don't seem to bother me and the climate control thoroughly appeals though it will take longer and I am still mulling it over. My instinct is that things will gradually improve with time and that my adrenal glands will start working again, but I guess we'll see. I guess I don't need much more testing at the moment..I've been offered skin tests but I think I am just too reactive to endure that right now. I'm going to try to taper my steroid tomorrow and I really hope I don't get worse! I will keep you posted. Thank you SO much!!

Title: Re: anaphylaxis Post by Lisa on 09/15/11 at 00:39:16 Thanks for the nice words!!  You are very kind! Tell me, where are you living right now?   It´s very possible that you are living near a masto specialist and don´t know it.  If so, perhaps by explaining your upcoming move, there might be a way for them to open up a spot to see you.  Let me know. As to the skin testing, I agree with you, it may not be very interesting to do yet.  However, what tests have you had run on you?  Sometimes we patients can tell what your doctors have been looking for and what direction they need to go in by what you tell us, for many of us here have had EXTENSIVE testing done on us.  You see, in order to find a mast cell disorder, most doctors don´t know about it in order to look for it and even then, there are so very few markers for the disease that unless the doctor knows specifically what he´s looking for, he won´t find it.  And even then, it´s possible for those markers to come back negative and still have masto!  Yet again, only those doctors who really KNOW masto will know this!  This is why most of us run around in circles for years before finally we find a diagnosis. So, Ana, tell us what your tests have been and what you´ve been through and some of your symptoms and let´s see if some of us can help you gain more direction and help.   By the way, don´t get discouraged, dear, you WILL find your answers.  We´re a pretty good group here helping to keep the ball rolling and even if you find out it´s not masto, we can still help to encourage you until you do find out what it is!!! Hugs!! Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 09/15/11 at 14:31:10 Lisa I've had a normal brain MRI and CT of the chest and abdomen Weakly positive ANA All other bloodwork has been normal including tryptase. I am going to get a holter monitor and my cortisol levels checked before I go further with the steroid taper because of my tachycardia. I live in Canada but am supposed to move to Portland, Oregon.

Title: Re: anaphylaxis Post by Lisa on 09/15/11 at 15:38:49 Ana, I went back and saw your meds, and I forgot to tell you mine.   You´re undermedicated it seems and this is why the tachycardia and constant reacting.   You need to up your meds.   The great majority of us are on H1 and H2 blockers at least twice a day.  The choice of the H1 blockers is up to you and your doctors.  I take Allegra 180mg at about 6 am and again at 6pm.  Also Rantidine 150mg 2x/day Singulair 10mg 2x/day and ketotifen 6mg/day.  I take syntroide 75mg and naprix 5mg/day.  I get hypertensive with my anaphylaxis but the BP med doesn't really do much for that, but it helps with the arrhythmias that the masto has caused. It is typical for MCAS to produce a normal tryptase, but that will NOT rule out a MC disorder!!  Before the recent MCAS diagnosis came out, all of the doctors would have told you that you can't have mastocytosis with a normal tryptase.  THEY WERE WRONG!  What they didn't know is that depending upon the form of the mast cell disorder, the tryptase will not be highly elevated.  According to researchers in Harvard a healthy person will have a tryptase which will not elevate higher than 1.0ng.  Aortic aneurysm patients will show as much as 2.5ng but no higher.  Some leukemia patients will also show elevated trytpase, but in general if you have anything higher than 2.5, you've got some kind of mast cell degranulation going on, but it's not recognized to be diagnostic for Systemic Mastocytosis until it goes above 20.ng  However, they have found confirmed mast cell disorder patients with tryptase which is in the normal ranges.  My son is one case.  He has confirmed MC aggregates in his intestines and his tryptase is 2.6ng!!   My doctor was very surprised with this for his tryptase is lower than mine at 4.6 and we've not been able to find the aggregates!  They're hiding! The ANA is indeed also indicative of the autoimmune form of masto.  It has been recognized that an autoimmune form of masto exists, however, there has not been one article to profile this patient or to report to it's existance.  We patients and our doctors are totally blind and walking in the dark tryign to figure out the role of the autoimmune markers and the effects upon our bodies.  Mine is 1:320 and many others of us here also have this and hashimotos as well.  These markers, when they are vague and don't fit into any other classic autoimmune disease are considered belonging to our masto.   As to the steroid, it will help, but try to get off of it as soon as you can.  The masto authorities no longer use this on us if they can.  They've not found it to be so very beneficial long term.  It used to be standard procedure for IA patients, but doctors like Dr. Castells have found that using the histamine blockers and leukotreine blockers much more effective.   She is who put me on my meds and let me tell you, Singulair is miracle medicine as far as I'm concerned!!  Two doses a day are necessary for me to feel close to NORMAL!!!  Once dose a day just doesn't do it!!! Have you done a 24hr methylhistamine urine test?   How about a 24hr prostaglandins D2 test?   If you can also try getting your serum heparin and serum histamine tested, these will help confirm MC mediator release.  I think there are a few more, but I've got to look them up. Ana, the tachycardia will improve if you can get on the right meds.  It's high due to the MC mediator release.  Deal with it, and the tachycardia will improve as well.   Speak with your doctors about increasing your meds but also adding in a 3rd dose for a while until things get settled down.  There are times when we get so super reactive that it only feeds more reacting!!   I have a positive finding for an ASST skin test.  I'm allergic to my own serum.  So, the more I react, the more I trigger my own self!!   The calmer I can keep my body, the less reactive I am becuase I break the vicous cycle my body gets trapped in.  This is likely the role of the autoimmune form of this disease. So, when I get too reactive, I up my doses so that I have an extra dose of meds at about 1pm or so.  This way I don't go more than 5 or 6 hours without a booster.  This way the Krebbs cycle of energy is not disrupted and thus the MCs are not triggered.  This helps my system calm down and then after a bit I can pull back on my meds to a more normal dosage of ever 12 hours.   Yet, when I begin feeling reactive or too tired, then I hit back in or take them earlier than normal and this restores the balance once again.   the tachycardia will respond accordingly.   So, if you can, pull off of the steroids and double your antihistamines and singulair instead.  This will probably give you the improvement you're needing. I hope this helps you!! Hugs! Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 09/15/11 at 18:37:09 I had a normal urine histamine, but have not had the other tests you mentioned. You are so knowledgeable about all of this, wow. Did you have tachycardia? I have it most of the time but it's worst if I stand. I had arrhythmias during my anaphylaxis because I was given too much epinephrine and had myocardial ischemia--so I worry that the heart rate issues could also be from that. But I did have a normal Echocardiogram and ECG after that. Otherwise right now I am heat and cold intolerant--very afraid of getting trapped anywhere that might get too hot. I itch all over off an on and have dermatographism and the odd rash. But my breathing and throat swelling has improved so much with the pulmicort. Overall these symptoms are much improved over the last months except for the weight gain and deconditioning from going through all of this. Everyone's anxious to get me off the steroids which I agree with. It's tough because the symptoms of allergy, adrenal insufficiency, and drug side effects all overlap so no one's sure what's what. It seems I can eat whatever I want--though I'm avoiding raw fruit and spicy food. Can you manage normally day to day on those medications? Can you work? Do you travel and eat out etc? How many years have you had it? Yes you are on much higher doses than me of the ketotifen and singulair..that is good to know. They wanted to do the ASST on me but I would've had to stop all medication and I felt it was just too dangerous. If I lean against the wall I turn red so I also worry the test might give a false positive if done too soon.

Title: Re: anaphylaxis Post by Lisa on 09/16/11 at 02:29:00 Ana you sound like me!!! My masto came out of hiding with my hysterectomy in 2007.  My gyno is the only one who took it all seriously because he KNEW that my hysterectomy was NOT my issue!!  He didn´t push me into surgery, I made the decision with his help - fibroids that were growing way too quickly with a family history of breast cancer....what other options did I have???  With 3 kids, who want´s more????  So...it was not a hard decision to make when you want to protect your health.   Actually, the surgery and the appearance of the masto saved my life!  I had an ascending aortic aneurysm, which is hereditary and we only found that by chance while looking for the carcinoids!!  So, if the masto had not appeared with my surgery (I had my first reaction to medication while still in hospital!), we´d never have gone looking and never found the aneurysm!   When I say you sound like me I´m talking about what you are describing about the tachycardia and the redness and such.   The tachycardia is likely POTs.  In masto patients POTs can show itself by being either hypo or hypertensive.   This is proven to be connected to MC activation and if you google Orthostatic Hypertension with Mast Cell activation, you will come up with excellent articles regarding it. http://hyper.ahajournals.org/content/45/3/385.full I once had my pressure shoot up to 230/110 while I was standing waiting for paperwork from my angiologist!!  She about freaked because I got ill there in her office and she knew about my aneurysm!  Yet, here´s the trick, while I was there on one of her tables, she had me take catopril to bring my pressure down.  It brought it down so quickly that it put me into anaphyalxis!!  She argued that it was the medication itself being that it´s a derivitive from snake venom but when we used Adalat at another point in time, it´s a known MC stabilizer, so it´s masto friendly, but it too has the same effect on me.  Dr. Castells had to step in to help us figure it out - the anaphylaxis isn´t due to the medication, but it´s effect, the stress upon bringing my pressure down way too quickly!!   This is stress anaphyaxis.    But the mere fact that when I´m too reactive, this makes it totally impossible for me to stand still, even in a slow moving line!  Yet, when my meds are up to the levels to cut the reacting, then I can face lines pretty well without too many issues.     So, the culprit with your tachycardia isn´t a heart problem in and of itself; The cardiac issues are a symptom, not the cause.  Deal with the masto and you´ll take care of the cardiovascular problems it causes.  The holter is a good idea and see if they´ll do a MAPA as an extra measure.   As you know, even negative results give answers.  Ruling out is as important as ruling in!!! The intolerance to cold and heat is typical mast cell behavior!!!  The MC degranulates with physical stressors, chemical stressors and emotional stressors.  This is why there is a list of medications, foods, and physical stimulators which are known MC degranulators.  As Dr. Castells has said, few doctors understand the mast cell.  In understanding the MC you quickly understand mastocytosis for it behaves to the triggers just like the MC itself behaves.  This is why we go through so much activity.   This is why I say, our reactions to anaphylaxis are NOT like the IgE allergic patients, our mechanisms behind the anaphylaxis are different and it produces different degrees of severity to the anaphylaxis.  This is why most of us live through our anaphylaxis even though the potential to have serious episodes are the same as those who are IgE allergic.  The potential is always there, but the reality shows differently. I understand your concerns about the heat and cold.  We all go through this and some of us are more sensitive than others.  I live in Brazil and our heat is my major concern.  I live a prisoner of my home  during our summer months and it begins to get hot from November until April!  But January and February are our worst months and I don´t dare step outside past 9AM or before 5PM and even then, I need to take an extra allegra before hand or I´m in trouble!! The major challenge we face is that most of us have lived our entire lives allergy free and it is a tremendous effort to learn to live chronically allergic!  We´re not trained for this and we forget what our bodies are dealing with and so to retrain our thinking and habits is horrendously difficult and we find that we get into trouble mainly because we didn´t know we would react to certain things, or because we forgot to avoid them!!!   Listening to your body is ESSENCIAL and as long as you listen closely and hear it, then you will find that you will keep a great deal more stable!! Now, as to that carcinoid suspicion, FORGET ABOUT IT!!  YOU DON´T HAVE IT!   If you had, then when they gave you the epinephrine, you would have gone into the Carcinoid Crisis.  You´d have had a heart attack!!   For the masto patient, epinephrine saves our lives, but to the carcinoid patient, it can kill them!!  The way to turn around the carcinoid crisis is with that medicine my oncologist listed in his answer.  Yet, this is the curious thing about these two diseases, they give the very same symptom syndrome, but the way to deal with them is totally opposite due to the mechanisms behind the syndrome.  Yet this is how they used to tell us apart before the biochemical markers were discovered.  What they would do was give a glass of red wine to the patient.  The red wine will cause the same effect in both patients, flushing.  Then after provoking the flush they would give epinephrine to both patients.  In the masto patient the flushing would magically disappear, in the carcinoid patient they would get EVEN SICKER!!!   So, the fact that the epinephrine got you out of your crisis gives you the proof you and your doctors needed - IT´S NOT CARCINOID.   Now, there are indeed other things behind this, but emotional is NOT one of them.   According to my allergist, allergic reactions are not possible through emotional factors, there is always something behind it. What is the question.   So, in ruling out carcinoid, it leaves little else that caused your allergic reaction to the contrast.  If you´ve done IgE testing and that´s been ruled out, then you have very little else beyond a MC disorder, and this is what I think is the problem.   I, personally, think the ASST test worthwile to investigate.  It´s proven to be a very important diagnosis for me and it proves that my masto is indeed autoimmune.  My doctors suspect I´m an MMAS patient - that I do indeed have the clonal form of the disease.  It´s just not as serious as the SM patient.  The damage it causes is less invasive into the tissues, but the proliferation issues are indeed there. Yet this explains the normal tryptase because this is indeed part of this diagnosis.  I have information I can send to you to help your doctors with this.   Yet, this is the thing about masto, the geneticists believe that all form of mast cell disorders are indeed of a genetic defect with the MCs, and depending upon the defect with the genome will influence the form of the MC disorder.  I also believe it affects the behavior you show.  And I also think it has a LOT to do with the autoimmune markers as well - that some forms accompany autoimmune problems as well.  Yet, without any study or even a case history which profiles the autoimmune markers, nobody really knows.  All of my doctors are walking blind in a pitch black room in working with me and now my children.  So, as I´ve said before, what exactly the role and behavior of these autoimmune markers are, nobody knows, not even the highest authorities.  Your doctors are free t find out WITH you!!   So this is why I think the ASST test your doctors want to do is valid.   I understand theirs and your hesitation, but I´m the kind of patient where I don´t want a single stone left unturned.  You can´t confront the beast if you don´t know what he looks like and you can´t fight a hidden enemy.  Knowing if you have a positive ASST test will possibly open up doors for future treatment.  So far it´s not opend up doors for me, but my doctor is still struggling to find answers.  We can´t find a single immunologist who wants my case!!  So, even IVIG treatment is not an option yet!  Xolair may even be attractive as well, but without any investigation, there are no answers.  Yes, going off the antihistamines would be necessary and  you´d have to keep a really low profile until you did the test just to keep from triggering, but you might be able to stay on the Singulair on higher doses and try to get by with that.  It´s worth a consideration anyway. As to the pulmocort, this works due to the cortisone. Yet, there is an inhaler with epinefrine, isn´t there?  This would be BETTER!!!!  On some masto patients the cortisone doesn´t have much effect, but on those of us who are autoimmune it does.  This is why the pulmocorte and oral corisone are so helpful to you, but as you know, the side effects are not good!  This is why Dr. Castells won´t use them anymore and I believe most of the other authorities.  The long term is more negative than any short term benefit.  And, if you can get your meds up to the right levels, then you won´t need the cortisone, I PROMISE YOU!!   Although I´m no doctor, I recommend that you have your meds doubled or even trippled and start this right away.  You will FEEL the difference almost right away.  It´s like having hidden under a very heavy blanket and when those meds are at the right doses, the relief of having that blanket pulled off is palpable!!! I´m going to give you my email address so that you can contact me and then I can send you some articles for your doctors.  Send them on to your doctors and read them yourself, for a lot will be explained with these articles and it will help your doctors gain more understanding as to your illness.   Hugs! Lisa

Title: Re: anaphylaxis Post by Susan on 09/16/11 at 19:44:33 Lisa is much more knowledgeable than I am. I CAN tell you though, that my tachycardia, erratic blood pressure, and chest pain, after several years of constant problems, improved within weeks of getting my antihistamine levels high enough. They were even pushing for me to have surgery on the hole in my heart, thinking it was causing the tachycardia. NO, it was the masto causing it! My allergist and cardiologist told me that Zyrtec is one of the safest H2 blockers for the heart. Lucky for me, as I cannot tolerate Allegra. But it also took getting sufficient levels of H1 blockers (Zantac) to help all the heart symptoms. I have taken 3 Zytec a day, up to 900 mg of Zantac a day, AND Benedryl as needed to get things under control. I had my physicians approval to do so. I now also use Singular and Ketotifen, both of which work their own miracles. Ask your doctor whether there is any reason you cannot take the antihistamines as needed. It could make a big difference for you.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/17/11 at 15:27:15 Thanks Susan and Lisa I did a steroid taper today and so far so good, fingers crossed. I'm really hoping my adrenal glands are working again! I'm still tachycardic when I stand but it doesn't seem worse than before. My blood pressure has been very stable which I find reassuring. If the tachycardia persists as I taper the steroid, I will ask my doctor about trying and increase in the antihistamine or antileukotriene dose. Part of me wonders if the steroid itself or one of the other meds is contributing to the tachycardia, but I guess that's wishful thinking. Lisa--I will email you. You had surgery for an aortic aneurysm??? Oh my goodness!!! Ascending aorta? Arch? Wow, you have been through so much. Did they think it was just random or do you have a connective tissue disorder? Thanks a  lot for sharing your experience.

Title: Re: anaphylaxis Post by Joan on 09/18/11 at 06:43:36 Are you drinking enough fluids?  I can get tachycardia if I'm even a little dehydrated.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/18/11 at 07:34:57 Yes I'm pounding the fluids but thanks for the reminder. I wonder if it might be deconditioning too. Since the anaphylaxis(3 months ago) I've been barely active especially in the first 2 months, near bed ridden and I was reading that the symptoms of POTS can be brought on by deconditioning. Of course, my skin gets more reacive if I do too much, but I m going to use that as incentive to try and move around more and see if it helps. I read that non standing exercise can help with POTS. I really hope this all settles down! Thanks Joan. I seem to be tolerating the steroid taper which I am SO excited about. I hope I can get off these for good!!

Title: Re: anaphylaxis Post by Lisa on 09/18/11 at 09:20:05 It was the ascending aorta.  It's hereditary.  And boy is that a long story!!  To make it short however, my doctors had no ideia of how to judge whether the masto had a role.  Recent research from Harvard proves that MCs do have a role and that the mediators are strongly involved, yes.  So, knowing the size of my aneurysm was near operating size, and hearing my angiologist say she thought she'd never need to operate, I realized that I could no longer keep my head in the sand and I needed the help of higher authorities to judge it properly. Thankfully I found someone, Dr. Craig Basson who was then at Cornell.  He's an authority on hereditary aortic aneurysms and he about jumped out of my computer into my bedroom saying YES I'll be glad to help!  He's also done research on the involvement of MCs in aortic aneurysms so he was perhaps the only doctor in the world who had the capacity to judge my situation.  Then after he indicated me for surgery, he found a cardiologist in Sao Paulo who could help me.  I also gained the help of a Brazilian cardiovascular surgeon, Dr. Pauo Evora, who is an authority in vasoplegia, and he knew all the very best surgeons here and he guided me through the surgeon jungle.  "It so happened" that the cardiologist that Dr. Basson indicated worked on the surgical team of the surgeon that Dr. Evora indicated.  With this cardiologist's support, his ability to understand the role of the MCs with my aneurysm helped the surgeon and the rest of his team understand the need for surgery and also the role of the masto.  When it came time for surgery, Dr. Evora helped the surgeon comprehend my situation even better and the anesthesiologist had also done some serious study and adapted her procedures to fit my case and so on on June 9th last year they successfully got me through what is perhaps the most dangerous surgical procedure a masto patient can face! Now, as to the aneurysm itself, I'm still working with Dr. Basson.  He's returned to Harvard from Cornell and his colleagues are the very researchers of the MCs in the aneurysms.  He's also a geneticist and is working with Dr. Christine Seidman of the Seidman Lab at Harvard.  Within a year after I began working with Dr. Basson, my family began looking at their own aortas and we found that ALL of my siblings and 1st cousins have one.  My aunt also died from hers shortly after I began working with Dr. Basson.  So Dr. Seidman decided to take over Dr. Basson's NIH study and transfer it from Cornell to Harvard and modify it to study my family in particular due to this very unusual activity within my family.  It's 2 generations of almost 100% activity, and this breaks the rules of genetics.  Well, it was only after we found that my eldest son has mastocytosis that they began to suspect that the genetic defect of masto is behind my family's aortic aneurysms! They suspect that although all of us may not show masto 100%, that the genetic defect is indeed there and that it is showing itself in the form of the ascending aortic aneurysm!  They've chosen to study us due to this suspicion. So, how's that for a mind blower????!!!!   Yet, thankfully, I've found the needed support in time for my family, for something like this requires the help of high level doctors on a long term basis and God led me to the very doctors who could give this to me!! :D This is why I've learned so much in so short of time - I've been doing a crash course in med school for the past 4 1/2 years!  All of my doctors have been doing as much as they could with the few resources they have at hand in order to help me.  Thankfully they are open minded doctors who recognized that I could have an important role in my own illness and treatment and they accepted my input and allowed me free reign while they gave all the support they could!  It put the ball always in my court, mind you, and has kept me under a lot of pressure, but, it also allowed me to find the answers I needed to save my life!  They've been more than happy to take the back seat and to learn right along side of me! So, this is how I faced it! Long story, and I left a TON of things out!!  But the short of it is, I'M ALIVE AND DOING VERY WELLL!!!! We masto patients CAN and DO find our answers and find a means of living well with this disease as long as we respect it and work with it. Hugs! Lisa

Title: Re: anaphylaxis Post by Lisa on 09/18/11 at 10:48:28 Anaphylaxing wrote on 09/18/11 at 07:34:57: Of course, my skin gets more reacive if I do too much, but I m going to use that as incentive to try and move around more and see if it helps. I read that non standing exercise can help with POTS. This right here is what makes me think that this is indeed a MC disorder!  From what I've read, POTs without MC activation does not do anything else other than the symptoms of blood pressure instability.  The tachycardia goes along with the symptoms of POTs, but not skin related activity.  That's in line with MC activation and the great majority of us masto patients do indeed have issues with standing still. I don't want to discourage you, for I know that what you're hoping for is that this is a temporary situation and that in finding the issue, that it will be quickly remedied.  I too want this for you.  Yet, I've learned from what my own experiences are as well as what other patients go through is that when our doctors look at our symptoms as individual symptoms without understanding the mast cell and it's function, they end up going around in circles for ever so long and we don't get the proper medication and improvement that we need.  Yet, when we finally find a doctor who understands masto and looks at our many symptoms with MCs in mind and then medicates us accordingly, then everything improves!! There are certain things about your case which says masto to me.  Granted, I'm no doctor, so therefore my opinion isn't important, however, if you can keep your doctors thinking masto, you may find your answers more quickly than otherwise.   You see, I've learned that the process of ruling out disease is as important as it is trying to pinpoint a disease and that sometimes by working in this direction we find our answers more quickly.  If your doctors have taken a good look at the obvious reasons for the tachycaradia and found it's not cardiac, then that means they've got a haystack which is pretty hard to search through.  So, they need to look at other symptoms to help them.  Your reaction to the contrast is a much more uncommon symptom and therefore much more valid for searching.  There are very few things which cause this to happen, and yet this is why I tend to suspect it's masto with you.   There are certain things about your case which make me think masto - and especially an autoimmune form of masto.  The fact that everything was triggered by a traumatic event.  Contrast is incredibly stressfull to the mast cells!  This is totally in line with autoimmune behavior and the altered ANA is confirmation of it.   The ANA was the very first exam which showed any alterations in my case.  In speaking here and on the other sites with other patients, those of us who do not have classic SM almost always have some kind of autoimmune markers be it hypothyroidism or elevated ANAs, these two are major markers for us.  The problem in not having one study done to profile us patients means that only the authorities, and then, only some of them, now about it.  Otherwise it's only us patients who know for we share amongst us what our markers are. The next thing that makes me think masto is the tachycardia which does not pan out as to having any other cause and the POTs.  Both of these are major issues for us patients!! If you doctors were to keep masto in their minds, this may help them to get to your answers more quickly.  Carcinoid is so unlikely mainly due to the fact that when you had epinephrine it resolved your reacting, this about resolves that it's not carcinoid.  It leaves very little else for you're probably not at menopause age, so hormonal imbalance is out.  I doubt you are taking any medications which could do this, and yet, here we have to return to that reaction to the contrast!  The only other thing, that I am aware of, which causes reactions to contrast are IgE mediated allergies, IgG mediated allergies and Mastocytosis/hereditary angioedema/Chronic Urticaria/Idiopathic Anaphylaxis.   Of these, the only one which falls out of the bunch is Hereditary Angioedema for the other two are most likely mast cell mediated disorders, but they just don't have the research to prove it yet even though there are cases which do connect them. How are you for doing a bit of experimenting?   About 2 years ago following gallbladder surgery I felt for the first time the impact of the antihistamines and the clear cut difference of when they are dramatically increased to the correct levels.  Following my surgery, upon going home, my doctors had not corrected my meds as according to the needs that surgery had created.  I had begun to go through intense anaphylaxis one day after the next for an entire week and even though I would get out of the crisis upon taking Allegra, because my levels were chronically low, I ended up getting into a vicious cycle of reacting and the anaphylaxis was feeding more anaphylaxis.  My doctors were at the point of rehospitalizing me when my masto specialist stepped in - she was not the operating doctor and since the surgeon didn't contact her, she hesitated to interfere until she realized I was in danger.  She immediately trippled my meds and it was like a tremendously heavy blanket was taken off of me within about 15 minutes of having taken those higher doses!  I WAS SHOCKED at how GOOD it felt!!  The relief was IMMEDIATE! and the anaphylaxis was cut dead in its tracks!!! My doctors were shocked!  They had no idea that this was how it had to be and either did I!  Yet it taught me some important lessons in how to get out of the vicious cycle.   You see, those of us who are autoimmune have a double edged sword at our throats!  Our bodies are not only "allergic"  to normal triggers, but they are also allergic to their own selves.  The more you trigger, the more you trigger!  You not only triggered to the contrast, but from that point on you've also been triggering to your own self and this is why the ASST test would be useful for it would confirm that you are allergic to your own serum.   So then, what do you do?  How do you stop the vicious cycle?  Well, you have to combate it with high doses of antihistamines, leukotreine blockers and MC stabilizers.   Talk with your doctors and see what they think about this, or, since this is over the counter medication, consider doing a one time experiment.  Double your dose of antihistamines.  I'm talking about only your antihistamines and nothing else.  Double the morning dose and then, when you've gone about 6 hours from that dose, if you feel that you're running a bit low, then add only one more dose. So, if I were finding myself doing intense reacting I would then take at 6AM, 2 allegra 180mg and 2 ranitidine 150mg but only 1 singulair.  This would be my doubling up.  Then, if I felt that I was running low, at about 1pm I'd take only more more allegra 180.   I think that if you were to try this, just one day will give you some answers as to that tachycardia I think.  If you found the higher dosage to be a big improvement, then this response is indeed an indicator as to what is behind that tachycardia of yours.   If it doesn't improve and instead gets worse, then your doctors need to keep hunting for I would think that this indicates something other than a MC disorder behind it. Talk with your doctors, see what they think about this and whether they think it's a safe thing to try.  It may not be cause I know that each case is it's own case and what works for one may not work for another.  However, I do know that this ends up being one of the ways that masto doctors confirm that their patients are indeed masto patients - by the way we respond to our medications.   I hope this helps! Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 09/18/11 at 14:39:37 Lisa thanks so much.  Yes most of me is fairly convinced that I at least have MCAD. The question of how long this flare will last, I do hope it will settle.  I will get the cardiac investigations and presuming that all checks out will definitely try an increase in antihistamines. If I get to my coping limit of itching etc, then I might also try it sooner. The problem is with this steroid taper I'm trying not to change too many things at once so I can see what the effects of the taper are since I had adrenal insufficiency symptoms before. I wish there were magic answers or that it would magically stop but I am THANKFUL that I am breathing on my own, not in the hospital, and able to do little things each day right now.

Title: Re: anaphylaxis Post by Lisa on 09/18/11 at 15:15:23 Yes!  I hear you!!  I´m sure it´s been pretty hard and most certainly terrifying!  I know exactly how it is because I went from being perfectly fine, without any suspicion to disease, so suddenly reacting to medications, in the ICU and back into the hospital several times with all kinds of reactions and things going on that it absolutely frighted me and my family out of our wits!  The very first time I went into anaphylaxis at home was really tough for the dyspenea was intense and it was NON STOP and I found myself unable to stop it and it frightened me as to what was happening!  Yet it was incredibly frustrating to go to the ER and to not get any kind of treatment to stop it and I had to suffer through it for 3 hours until I resolved on its own!  Yet when it happened the following day, in my doctor's office and went on for 4 hours, and again, with the ER doing nothing but wanting to give me sedation, it was really frustrating because there I was going through torture and they could't do anything about it but suspect that there were emotional problems!  Hard to swallow and very frightening! So, I know how you are feeling and I understand your caution.  I've had that very same mentality.  I didn't want anything masking my symptoms so that my doctors could find THE TRUTH!!   So, I'm hearing you and agree with you.  We each have to take our own leads in this, trying to find our own answers.  Yet with masto, this is actually necessary and also how it works.  That's because we all present our masto in different ways - each case is its own case and this is what makes pinning down each patient such a trial for our doctors for not a single one of us is alike! I'm praying for you and your doctors, that you can find some answers to this quickly!  Until then, keep pressing on !!! Hugs! Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 09/18/11 at 17:03:16 Lisa If you have time can you tell me more about how your mast cell disorder initially manifested after the surgery, what medications you went on and the timing of things? What caused you to go into anaphylaxis at home? You said you reacted for 6 months? Thanks so much! I still have to email you!

Title: Re: anaphylaxis Post by Anaphylaxing on 09/18/11 at 20:50:24 I meant to mention that I sympathize with your frustration of being told it's emotional problems. When I was in full blown anaphylaxis I heard the anesthetist say to emergency physician that I was just anxious. Then when I was in ICU I heard them say that I must have an underlying psych condition to be this anxious. It was SO hurtful and so scary to feel like I was dying and that the doctors around me weren't taking me seriously. After I received 12 doses of Epi, had a small heart attack and could barely move, one of the nurses asked my family to step out then told me to make my own way to the bathroom as I needed to stop being so weak and get on with things....I could barely sit up.   That being said, thank God, my family were my advocates and we did encounter many caring nurses and doctors. The problem is that no one has ever seen anyone react like this so had no clue what to do. I feel much more stable now even though I'm having some symptoms, am still afraid, and it's definitely not normal life.  I am trying to educate myself as much as I can so I can avoid going in to the hospital because it can unfortunately do more harm than good. the day I had the CT has turned out to be the worst day of my entire life.

Title: Re: anaphylaxis Post by Lisa on 09/19/11 at 05:05:29 Wow, you've opened up a real can of worms!!  It's a long story so I'll try to cut it short a bit! Prior to my hysterectomy, nobody knew I was sick.  Yet, in retrospect, I can see signs now that before were so indescript that I didn't realize I was sick.  The year prior to my hysterectomy I had vague fatigue.  I thought it was because I'd returned to college and at 45 years of age, you expect to get tired, so although my gyno did some blood testing, everything was normal.  But I have this vague achiness when I'd breath on certain days and I felt just really, really tired, but I kept pushing.  I also had 5 or 6 cases of giant plaques of Hives that didn't resolve with normal doses of antihistamines.  I had to use my husbands prescription of hixizine to resolve them.  Yet they were idiopathic and I couldn't figure out what the trigger was and since I'd never had this happen ever before as an adult, I didn't think too much of it.  I'd have these as a child, but never anything other than one day there, the next gone.  So, I figured it was something similar, but since I couldn't find a trigger, I knew that the dermatologist wouldn't be able to do much either.  The next thing was some abdominal pain, but I figured that this was due to an epigastric hernia that I'd developed with my last pregnancy.  These were all clues and my doctors know this now.   What led me to surgery was that my 2 fibroid uterine tumors which had been very quiet and stable for years suddenly kicked into overgrowth.  They went from 2.5cm to 5cm within 6 months!  It's suspected in my case that the masto had something to do with the rapid growth.  My original date for surgery was cancelled because I had a sudden case of phlebitis.  I got booted out of surgery when my doctor saw my leg - in the 2 days prior to surgery since he had seen me, it had changed overnight!  The anxiety over it caused my cervix to hemorrhage, which this was found later with a biopsy and proper staining of these tissuesa to have a MC hyperplasia.  According to Dr. Castells, this is indeed something which mastocytosis can do - it's not often seen, however, and rarely caught because it comes and then goes without rhyme nor reason.  And when I look back to situations 10 years prior to this surgery, I can see situations where what I thought was food poisoning was instead full blown anaphylaxis!  Always cheese was involved and I was the only one to get sick even though everybody else ate the very same food!  And the bouts of diarrhea I would have which I always blamed upon food, I can now pinpoint at to signs of masto!!  Retrospect is always 20/20! With the trauma of my surgery, my masto came out of hiding.  According to Dr. Cem Akin, this is not unusual with masto.  Either it was the medications used with the surgery or it was the physical trauma of the surgery itself which caused the masto to come out.  It came out ANGRY for 2 days following surgery, while I was stil in the hospital I had an allergic reaction to IV pain meds!  I've never reacted to any kind of medication before in my life, and since I've had 3 c-sections, I thought this was very, very strange!   The rest went well and I was released 4 days following my c-section.  However, during that week prior to my 1st revision with my doctor I began having trouble sleeping.  I'm not a back sleeper and I was pretty uncomfortable and began losing sleep.  With this I began feeling like I was going to faint as I was just drifting off to sleep!  So, this frightened me and I began to fight sleep, which only made everything worse!  After 2 days of getting almost no sleep I called my doctor for I began to have episodes of dyspnea.  This was 2 days prior to my appointment with him, which would be 5 days following my release, 9 days following surgery.  He gave me some medication to relax me, which didn't help a bit and after yet another night of almost no sleep, I went into his office, sat down and proceeded to go into a crisis of dyspnea!  I was so weak from surgery that I barely tottered into his office and when he saw how I was, hospitalized me on the spot!  He ran tests looking at the level of post-op anemia (normal for that stage) and infection (nothing) and then a pulmonary embolism. The only clue beside the dyspnea was hypertension, otherwise there was nothing else that they could see was wrong with me so I was sent down to the main hospital to do an angiogram.  My angiologist was called in for she had been the doctor to treat the phlebitis.  During the exam I began fainting all through it for they asked me to hold my breath and this made me horribly faint and I no longer had the strength to fight the faint and I was GONE!  When my angiologist saw this, she called the ICU chief in and she accompanied me through the angiogram, trying to call me back to full conciousness.  Then when they saw the size of the subcutaneous hematoma which I had at the site of my incision the two of them immediately put me into the ICU!  There was no pulmonary embolism found and I was kept under observation for 2 days then released to a normal room.  They called in another clinical doctor to see what was going on and he couldn't figure it out either.  My case left them all scratching their heads!  I was sent home, only to have this very same situation happen two more times in the 3 weeks following this incident.  My gyno had to call in colleagues to see if they could figure things out and both times he fought with them trying to convince them that nothing was wrong with my head, for they said to him "HYSTERECTOMY!"  and he said, "NO WAY! I know women and this one is not having any pyschological issues due to her surgery!  Something else is wrong!" From that last hospitalization my doctor kept sending from one colleague to another trying to find answers.  As the weeks turned into months, my symptoms became more and more established.  The stronger I got from recuperating from my surgery, the more evident the symptoms got.  In the beginning there was no flush - I was so very weak and anemic from my surgery, that all color was gone from me.  Now, in looking back, both I and my doctor know that it was by God's grace I didn't react during surgery, however, it was really by God's grace!  The subcutaneous hemorrage was very large and we know that this was due to the heparin release from the MCs, just like the hemorrhage from my cervix just prior to surgery was due to this as well.  This contributed to my being so weak because of the loss of blood.  Yet, because my masto was only coming out of hiding, there were symptoms which took a bit longer to show themselves like the chronic diarrhea and abdominal pain, the reactions to foods like chocolate and tomatoes and cheeses, etc.   After going to doctor after doctor, we found a few more clues.  An upper GI revealed gastritis!  We figured the stint in the ICU was the cause for this, but it took a good 3 months for the gastritis to show.  I also had a PHmeter done and it showed that I had reflux, but only during the day!  when I had the Manometer done, I not only had episodes of dyspnea, but I also fainted during the exam, freaking out the doctor and me!!  Now that I know how I react, the small tube used to do this exam had triggered a small episode of anaphylaxis!  I am extremely sensitive to invasive procedures and I go into anaphylaxis with them, but at that time, we didn't have a single clue!  We were thinking of physical causes to the problems, not disease!  We also found 3 small gallstones and my doctors pounced on this saying, THIS IS THE PROBLEM and I kept saying NO!! for it was completely assymptomatic!!  So we kept searching!   Meanwhile, my gyno kept sending me to his colleagues, all men!  They all said EMOTIONAL/PSYCOLOGICAL and when his last hope, a gastrologist/surgeon saw me and openly declared that I was " in mourning for my uterus"  he about had a cow!  He decided to take my case back in hand!  Fortunately, by this time I was getting so very reactive that it was easy to trigger me!  Going to all these men doctors also made me anxious for I now was pyschologically traumatized by their accusations and I was so upset with doctors in general that just going in to consult was so momentous that I would end up triggering in their offices right in front of them!  Even with my gyno!  And sure enough, I went in to see him and triggered right there with a bigger reaction.  He saw me turn bright read and then purple due to the fact that the dyspnea had become so strong and clamped down on my thorax and would not let me open up my chest to breath properly!!  I also had one hand turn blue and the other dead white, another proof of autoimmune activity - Raynauld's! With this he took my various symptoms and researched it.  He raised the suspicion of Carcinoid syndrome and masto and asked for the 5-HIAA test for methylserotonins.   The day before my exam was ready, I had been playing a game of Brazilian Dodgeball during the recess of the children at my school.  It was a great game and after 4 months of a tough recovery, it was the first time I felt well enough to play with the children.  Never having heard of excercise anaphylaxis before I had no idea that this would trigger me!  I didn't go into anaphylaxis right away.  I first had incredible brain fog, weakness, abdominal pain and diarrhea. My husband took me home and put me to bed, so exhausted that I was!  I was extremely cold and slept heavily for 4 hours!  When I woke up I was horribly weak and tired but I had to make dinner, and the effort to stand and make dinner was enough to tip the scales and I went into anaphylaxis!  The dyspnea would NOT stop!  After about 20 minutes of this I told my husband to take me to the ER!  They didn't know what to do because my pressure was high and they couldn't recognize what was wrong so I stayed 3 hours on an IV without relieve going from intense dyspnea to syncope, back and forth until finally the reaction worked itself out.  Yet the next morning I had an appointment with my doctor but I never made it into his office cause the stress of getting dressed and to his office was too much and I went into a crisis in his waiting room.  He put me on an available table in another office and he spent 2 hours running back and forth from his office to where I was to check on me and most of the time - he caught me going from syncope to dyspnea and back and forth again!  After 2 hours of this he sent me to the ER at the main hospital (he's the director of the maternity hospital).  I didn't even get to show him my test results which were negative anyway.  My friend who took me said he was literally pulling his hair out when he saw the results and said to himself "I've sent her to the best clinicians I know but they don't take her case seriously!  I can't get any help here!"  At the ER, he sent a note detailing my symptoms and while talking with the doctor he looked at me and said "You don't look very red to me!"  and then put me into a bed, with another IV, did  a few tests.  He offered Buscopan for the abdominal pain, but they only thing they wanted to give me was a heavy sedative which I refused.  This crisis lasted 4 hours!   This situation freaked me and my husband out as well as my gynecologist!  Yet, it served to reinforce his theories that there was diesease behind this!  So I went to a hematologist, whose very first question was "So, do you feel mutilated?"  Yet when he examined me and pressed upon my abdomen, he triggered the dyspnea and flushing!  He didn't give much value to the carcinoid theory but ordered a CT with contrast - a barrium swallow.  Since my prior angiogram 5 months earlier didn't cause any reaction whatsoever, I didn't have any suspicion of being allergic to the contrast, so without any pre-medication I took the barrium.  I had within 20 minutes explosive diarrhea and flushing!  The diarrhea lasted a week but thankfully the reaction was no worse.  No tumor found!! This doctor couldn't figure it out and he sent me back to my doctor!  We got so frustrated with this that my husband and I figured that since the carcinoid tumor was brought up as suspect and it was the more dangerous of the two diseases, that I'd go see an oncologist.  He confirmed my symptoms and suspected carcinoid but he openly said that he couldn't hunt it down!  He said the reaction to the contrast was definitely due to the disease and because of this he wanted me to see a specialist.  So, with this statement we tried a 2nd oncologist.  He said the very same thing and said that it was too dangerous for me to try to work with him due to my reaction to the contrast and he said I needed to seek out a specialist either in Rio or Sao Paulo, but he didn´t have anybody he could send me to.   So, after googling some case histories of Brazilian patients with carcinoids I wrote to one doctor who told me of an excellent doctor in Rio and he made the contacts for me and within 3 days I was in my now oncologist´s office!!  He is who prescribed Allegra to me as an SOS medication.  It took 7 full months of going through absolute torture before I finally was in the hands of someone who KNEW what they were looking for and gave me something to help.  However, I didn´t begin taking the Allegra on a daily basis until another 4 or so months had passed.  My oncologist didn´t  prescribe it for daily usage, only for emergency use.  Yet my husband saw that it got me out of my crises which were becoming more frequent and it was he who suggest I use it daily.  So, to finally get on daily antihistamines it took 11 months, but that was only 1 pill of allegra 180mg a day!  I stayed on that dose until I finally found my wonderful dermatologist a year after this, 20 months following my surgery!! The wear and tear of the anaphylactic episodes with hypertension that would go on for an hour or more during those first 6 months took their toll upon my aortic aneurysm! The very first CT showed it was 4.6cm, but that 2nd one showed it was 5.0cm after only 6 months!   However, although the first angiogram is what showed the aneurysm, nobody noticed it for they were too distracted by the large subcutaneous bleeding they had seen from the plastic done with my hysterectomy.  It took another 11 months to find the aneurysm - not a single doctor had noticed it, or they thought I already knew and didn´t mention it to me.  Yet when I returned to my angiologist to see if we could find explanations for the syncope, which had become serious, she took one look and did this :o!  So, she asked for another angiogram to take a look at my aneurysm and although I pre-medicated this time with common allergy protocols, yet I still had a severe reaction!  (we've since learned that I apparently have some kind of IgG reaction happening here for every single time I have contrast, my reaction is stronger and more severe even with the REMA protocols!  Again, another first situation for masto patients!)   My pressure shot up to 220/110 and I lost full consciousness immediately.  After they brought me back and she and the anesthesiologist went their separate ways, I ended up going into syncope again for 3 full hours this time - NOBODY could get me out of it!  And it freaked EVERYBODY out for nobody had seen anything like this before!!  They tried to get my angiologist back, but they could't reach her and when I sent her an email the following day telling her about what I'd gone through, she put me on prednisone right away due to may ongoing reactions.  I was a total wreck!!  Yet, this situation ended up being a watershed situation for with this my oncologist released me and sent me on to the highest authorities in carcinoid and they ruled out the carcinoid!  However, they gave me a "diagnosis"  of Hysteria because they sent me to a neurologist when I described how my syncope was - it's a semi-conscious state where I'm partially aware of things around me depending upon the depth of the reaction.  This has been studied but only once and it's been found to have intense vasoplegia as it's cause.  It's a very, very, very rare masto reaction and only masto patients undergo this particular form of syncope.  It's not epilepsy - I've already investigated this with Dr. Castell's insistance - the highest authority in epilepsy in Brazil took my case and fully ruled it out and declared it to be syncope and agreed with the literature.   Yet, at the time of this "diagnosis"  I was devastated for although it ruled out the carcinoid, it left me totally abandoned and completely alone not knowing where to go nor what to do!! Yet when I got home and patched up my wounds I began working with women doctors for they don't consider a hysterectomy as tragic a situation in a woman's life as the men doctors do and they were incensed over the horrendous treatment I'd incurred and they are who began looking in the right areas.  The first, my nephrologist/generalized clinician said, "Let's look in autoimmune, all your testing has only been limited to cancer!"  This is when my ANA came up positive!  I cried from sheer relief for it confirmed what my gyno and I had been saying all along - something was definitely WRONG!  From that point on, I began seriously studying masto and asking thousands of questions and reading as much literature as I could - case histories, scientific articles, etc!!  I've made myself a total pest with the experts for I quickly recognized that I had a case that was highly unusual!  Every finding we got, I googled it in connection with mastocytosis and the more I found, the more rare my case showed itself to be! Yet, this hard work and study has definitely paid off by saving my life!!  Without it we would never have known even half of what we now know about my case - I would never have gotten the diagnosis, nor understood the syncope and the danger it puts me into, I'd not have known that the masto could be involved with my aneurysm and I would never have guessed my angiologist couldn't take me into surgery or that if she did that I would never have survived it being done here in my small town!  My insistance has without doubt reaped incredible fruit and with every victory, I've regained my confidence in doctors and also gained newfound confidence and self assurance in my own abilities!  With all of this, the fears of the anaphylaxis have disappeared as well as fears for the future and what it holds!  I've faced the most dangerous surgery a masto patient can face, I've faced death, and gained a victory over it!  It has totally changed my outlook on the future and I no longer fear it!  Instead, be what may happen to me, I can accept it regardless, for I'm not emprisoned by my fears of the present! So, I'm sorry for such a looooong post.  Yet it's such a complicated story and I honestly left out a great deal!!!!   So, I do appologize for how big this is!!  I've hesitated to write my story for people here due to how complicated and big it is!!  Instead, I prefer to relate only some of what I've been through as according to what each patient might be facing.  My reactions are not typical masto patient reactions - most patients don't have such severe reactions.  This is because I'm suspected to have a very rare form of masto, MMAS, which is only recently discovered.  It is known for very severe cardiovascular reactions and my doctors say I fit the profile to a T.  However, it's a very hard form to diagnose since this patient is known to have normal or low tryptase levels.  When our levels are as low and normal as mine are, the amount of MCs found in the bone marrow are very, very few and a special flow cytometry process to purify the bone marrow must be done in order to find the few MCs and then test them.  So, unless my trytase rises and until it does, we must be content to leave it as a very strong suspicion.  It could open up some treatment options if we new, but for now it's fine because the medications I'm on are giving me improvement and really, that's all that really matters! So, I hope that my story doesn't freak you or anybody else out.  I hope it helps you gain some insight for your own case.  If you want, you may copy this for your doctors if you think it will help them. As to your doctors and THAT NURSE, she should be FIRED!  My sister is a doctor and she told me that it is NORMAL for patients in pain to be anxious!  Yet, our doctors who see us reacting or flushing and see that we are anxious jump to all the wrong conclusions and it only goes to prove how LITTLE they understand the mast cell and the body and how the body responds to anxiety!  This overemphasis upon stress and anxiety is forcing doctors world wide to miss the boat!!  Yes, anxiety will indeed trigger reactions, IT'S SUPPOSED TO!  Dr. Castells told me once that MOST DOCTORS do not understand the mast cell.  I FULLY AGREE!!  If they were to study the lowly mast cell and gain understanding as to what factors make it trigger, then they would know that anxiety is a major trigger, but that doesn't mean it's a psychological problem!  Patients have a normal amount of anxiety and it should not be looked upon as a symptom unless there are other, accompanying psychological symptoms to CONFIRM that the anxiety is out of balance and thus a factor in the life of the patient.  But due to this blatent ignorance as to how the MC functions, they can't undestand the flushing or other symptoms that will come up with us masto patients!!  Granted, flushing may be seen in a normally anxious patient, but NOT reactions to contrast!  That was pure STUPIDITY and IGNORANCE and I too had that comment done when my pressure shot up to 220/110 with that 2nd angiogram!  It was the anesthesiologist who declared that my reaction was not due to a hematological cause!  (read psychological between the lines!)  Yet, what our doctors don't realize is that due to their own psychological pressure to have answers for their patients and their reluctance to show before the patient that they don't have all the answers, they jump too quickly upon accusations of emotional or psychological imbalances!  They end up causing more emotional scars this way of an already traumatized patient!!!   Although it was hard to hear a doctor say, "I don't know, I can't help you any more"  and then send me packing, it was far more beneficial to me than attacking me saying I needed psychological help because I was "too anxious"!   Honestly, if they had gone through what I'd experienced, they'd be traumatized too and I KNEW it!   And knowing this is what totally undermined all of my trust in doctors!  I at first suspected it was only Brazilian doctors, but after speaking with other patients around the world, I'm convined that this is an international attitude which goes beyond borders!  It's pandemic! All I can say, is, without a single doubt, YOU DO NOT HAVE PSYCHOLOGICAL/EMOCIONAL PROBLEMS!!!   THIS IS MASTO!   This is what masto patients undergo!!!   I'm very sorry you were so badly treated, for you are 100% correct, we often are much safer trying to deal with our reactions at home than that of going to the hospital!  It's a dangerous disease to have to deal with doctors who don't know what they are dealing with and my advice to you, which I also received from a doctor who saved my life - do NOT do any kind of invasive procedure without first being pre-medicated.  Do NOT do any kind of surgery until you have a diagnosis!  If you must, then presume it is masto and pre-medicate accordingly!   There are no patients who are more allergic than masto patients!   So, in premedicating with the REMA protocols, you can indeed face surgery and your doctors will make sure you are the safest patient in the entire hospital!!!!   Well ENOUGH!!!!   I've spoken enough for 10 people!  Again, sorry for the size of this! Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 09/19/11 at 12:03:38 Oh my gosh Lisa, you've been through SO much and are yet still so positive and energetic, way to go!  I can't believe the run around you had before finding stability but it speaks to the generalized lack of familiarity with the behaviour of mast cell patients. So frightening! My skin seems way less reactive today which is great, but I was just brushing my hair and my heart rate went up to 150, which scares me. So I'm back to lying still.  I'm really hoping I get the heart investigations soon. I'm reluctant to taper the steroid anymore until this sorted out in case it gets worse. The problem is the steroid might be making it worse too. AHK!  Too many things to sort out.  I look forward to the day when I have a handle on all of this.

Title: Re: anaphylaxis Post by Anaphylaxing on 09/24/11 at 15:18:29 Just an update, I didn't tolerate dropping the steroid level. I had my cortisol level checked and it was one tenth of the lower limit of normal suggestive of severe adrenal insufficiency. So I have to go back up on the steroids. There's a chance they might wake up eventually, but there's a chance I'll need steroids for life. My reactions have been fairly controlled. Other than, I had a holter monitor and my skin is still red from where the leads were stuck on  and I got blisters on my lips today when I ate supper. Really hoping better days are ahead.

Title: Re: anaphylaxis Post by Lisa on 09/27/11 at 01:17:36 Gosh, I can´t tell you how sorry I am to hear of both of these situations!!  Have your adrenals stopped working due to the steroids, or were they already having issues?   If it´s the first, it makes me wonder why we are so easily recommended to use these meds if it´s so easy to have our adrenal glands quite like this!!!   Do you know why this happens? I know how it is with the marks on your skin!  Whenever I get some kind of EKG done, I end up with circles of red all over my chest!!!  Sucker bites!! haha!!   They disappear with time.   This, I believe, is because the MCs within our skin are so very sensitive that the heperin is easily released and this redness is nothing more than a mini-hemorrhage of the cells there.  Thankfully, it doesn´t put us into danger, but I don´t believe that this is the case for those who have the skin lesions of UP.  Those patients must be VERY careful that those things are not put on top of a UP spot for that could put them into anaphylaxis!!! As to those blisters on your lips, try to remember what it is that you ate for this is most likely the cause of the blisters - your mouth mucosa reacted to whatever it was you were eating and thus created the blistering.   I´ve seen it when my entire mouth will have a slight molting of the outer layers of tissues.   It never occurred to me it was reacting to something I ate until right now, but I´ll bet you anything that was why. Again, I´m sorry to hear your new, Ana.  I hope that your doctors can help you with this situation!!! Lisa

Title: Re: anaphylaxis Post by iamnotalone on 09/27/11 at 12:11:15 AHA ! Once again, Lisa's right (Lisa- You SURE you're not a Dr.;)? I too got bumps all over my lips shortly after I'd taken echinacea for a bad cold. Also, inside of my mouth felt like ALL of it was burned for over a week, from holding Listerene in it (for a bad crown job). Molting is the perfect word to describe what happens to my son when he used any of the toothpastes w/whiteners. Jeez... are we a bunch of misfits or what? Make that "mastofits" :D lori

Title: Re: anaphylaxis Post by Lisa on 09/29/11 at 04:20:15 Funny Lori, your talking about your mouth!  For some odd reason my mouth molted this morning!  It´s the weirdest thing and it´s happened before but I´d not been concerned for there´s nothing painful about it and since I´ve learned that with masto if it isn´t hurting it can be ignored, so I did.  But to have my mouth slough off this lining makes me wonder...hmmm now what caused that????   I'll have to meditate on this and keep an eye out for the future to see if I can spot a connection.   This is the "fun"  part of studying our disease, seeing the connections!!!   Hugs!

Title: Re: anaphylaxis Post by Anaphylaxing on 09/29/11 at 08:25:45 Good to hear that others have experienced it. I'll try to figure out what's causing it. For the adrenals--no one knows whether they were shutting down before all of this started, if they were damaged during the high dose steroids of anaphylaxis, or if they are suppressed from me having been on steroids for 3 months. In my simple understanding: When you take steroids they convert to cortisol in your body. Because of these new high levels of cortisol, your body stops making it's own if you're on steroids for more than a week or so.  Initially it suppresses the normal brain signals sent to the adrenal glands. With time and the lack of this brain stimulation, the adrenal glands can atrophy now creating two problems--lazy brain and lazy adrenals. In this case, however, the good new is that MOST eventually regain normal function over some vague period of 3 months-4 years. The problem is, until that period of time has passed it's quite difficult to know whether it's permanent or temporary. Steroids are so dangerous and should only be taken if absolutely necessary. They are powerful life savers when they're needed though. They should always be used for the shortest time frame possible when they are necessary, so that you don't end up like me. So, I'm struggling with not knowing what I'm faced with--lifelong steroid dependency, or temporary dependency. I need to see a good endocrinologist which might require me traveling somewhere and I still have not been brave or feeling strong enough to travel. An item of good news, I'm trying to wean my steroid inhaler and was struggling, but since I've increased Singulair, I've been able to decrease it slightly and I'm really hoping that I might be able to get off of it. Thanks for all of the help and support!

Title: Re: anaphylaxis Post by Lisa on 09/29/11 at 15:00:18 Yahoo!!!!!   Even one little victory is STILL A VICTORY!!!!!  :) Thanks so much for that informaton on the steroids!  I didn´t know that!  It also confirms my own convictions of what I´ve experienced!  When my angiologist informed me that it had a role in my hypertension crisis I said NO WAY will I take it except under VITAL circumstances!!  Besides, it RUINS my diet - it gives me the worst case of MUNCHIES! HEHEHEHE! Thanks loads Ana!!  :)

Title: Re: anaphylaxis Post by Anaphylaxing on 09/30/11 at 16:21:28 Had a "low steroid" spell today I think, headache, got really out of it, drowsy, so had to take extra. I am so afraid of falling into adrenal crisis and needing to go to the hospital. I am going to try a road trip next week. I'm not better but I don't think I will be for ages and if I don't do it soon, winter will set in and the roads will be dangerous.  I will take it one day at a time. I've checked and at the most it's 2 hours between towns with hospitals. I'll bring extra steroid medication, Epipens etc but hopefully won't have to use them I had lip blisters today and I suspect it was garlic in case that helps anyone.... Thankfully, i seem to be okay with chocolate! I hear ya on the munchies. On the high dose steroids in hospital i was eating everything in site. I didn't gain weight then, but after 2 months of steroids and now going on four months I've gained almost 20 lbs total and who knows how much longer I'll be on them. Anyway, I'm alive and thankful for it. I am going to stay on all of my antihistamines until I can get off steroids.

Title: Re: anaphylaxis Post by Lisa on 09/30/11 at 17:11:17 A road trip!!  WHERE TOO????   I love to drive and getting away does me good, but be careful Ana!!  You may not feel the effects that the constant vibration does to you, but it does.  I causes me to faint when I take a long trip anywhere.  It didn't used to, but it does now - perhaps its still part of my recuperating from the open heart surgery and will improve with time.  Still too recent I think.   Ana what are the symptoms of an adrenal crisis?   I don't know.  As to your symptoms, gee, I've had those too, so it may not be a low steroid day.   There are days when I'll wake up with my head ready to blow up!  On those days I wake up shaking like a leaf, so weak and miserable.  I have to drag myself through those days for the exhaustion is incredible at times!!   This is a day when I have to double up on my antihistamines, or I quickly get into trouble!!!  My BP will easily bottom out going to 70/40 at times and I need to sleep with the blankets piled high even when we're in the midst of our Brazilian summer!   Sleep is all my body craves on days like this!   Once we were able to catch it with the CBCs and on this kind of day they were off with my platelets going below normals and showing anemia too.  But then once I'd get over this spell, everything would magically return to normal. So, this is what makes me wonder, is it really a low steroid situation or not just the masto misery you're going through. Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 09/30/11 at 18:54:10 Lisa It's SO difficult to know what is what.  However, my itching, flushing and other symptoms are almost non existent lately. Everything I feel is "classic" adrenal insufficiency and I have the low cortisol level to collaborate with that. Also, today when I felt that way, I took a bit of steroid and I perked up within 30 mins----now, I guess steroid might also improve masto Sx. Adrenal insufficiency classically presents with fatigue, malaise, nausea, low BP, abdominal pain, dizziness, coma etc. It is an emergency and one needs to take steroids immediately or it becomes untreatable. Sometimes IV steroids are required to fix it.  So one tries to find a steroid dose that allows you to function then if there are ever signs of infection etc you have to double or triple your usual dose....if vomiting or unconscious you need IV meds. So, you're right, it could be masto or adrenal, but the way I see it---I know for sure I have adrenal insuffficiency and it can be life threatening so I can't take the risk of not taking the steroid for now. I honestly feel like I'm getting some "control" of the masto symtpoms and since when I feel like I'm in adrenal crisis my steroid level should be obscenely low and I haven't noticed a flare of the other stuff I usually get. BUT--this is all new territory and I by no means know what i'm dealing with. I figure though if I'm going to be sick for months I should try to get myself to another city that makes it easier on my family so I am going to try to go to where my parents live for now. I hope too to see an endocrinologist there which might help. But, I am going to map out where each hospital is en route and reassess each night. If I'm sick I stay in the city I'm in and try to get better. I will not push on. Also if I get half an hour into the trip and it's bad, I'll turn back. I just find flying SO stressful, though quick, and if there's temperature changes or anything I'm hooped because I just can't tolerate it. I am terrified to be honest, but I just feel the urgency of winter approaching and don't know what else to do. My biggest fear is that I will become acutely ill and we will be too far from urgent medical care to save me. . . But, if I can get to another city, even if I get sick there , I should be no worse off than here

Title: Re: anaphylaxis Post by Anaphylaxing on 09/30/11 at 18:56:50 ps I am bringing 4 epipens 2 steroid emergency injections and IV fluids with me

Title: Re: anaphylaxis Post by Anaphylaxing on 10/04/11 at 19:28:13 Change of plan I'm going to try to get to Mayo or Boston and be seen I am getting worse and need to be sorted out My country has recognized that they can't manage  me here so will hopefully fund it. I just don't know if I can endure the trip or how long it will take to set up

Title: Re: anaphylaxis Post by Lisa on 10/05/11 at 00:09:00 YAHOOOOO!!!!!!!!!!!!!!!!!!!!!!!! THIS IS JUST FANTASTIC!!!    No!  not that you are getting sicker, but that your country is recognizing this and sending you to HIGHER AUTHORITIES!!!!   Gosh if only Brazil would do this for me!!! Ana this is really the very BEST way to go!!!   GO TO DR. CASTELLS OR DR. AKIN!!!!     It´s generally a 3 month wait to see them, so I will give you their contact information so that you can have your doctors call them.   I think that if your doctors will do this, it may open up a door to see them more quickly if they (the Drs in Boston) feel your case is requiring it.    But, I believe 3-4 months is about the wait to get in, unless they were to arrange for you to get hospitalized then I believe it would be a different deal. Yet this is really ideal, for then if they feel that there´s a need for a bone marrow biopsy or any kind of other scans or scopes, they will have it all done right there in their own labs where you can trust the results.   HURRAH!!   This is SO MUCH BETTER then fumbing around with a bunch of doctors who really don´t know what they are doing!!!!!!! :D Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 10/05/11 at 10:46:25 Yes it seems it will take  awhile to arrange I wanted to get travelling to at least get me away from the hospital here but I've been feeling worse the past couple of days and developed a fever today which means I need to double my steroid dose and keep an eye on my stability as I might need to be hospitalized for fluids and steroids EEK Don't want to go back in hospital

Title: Re: anaphylaxis Post by Lisa on 10/05/11 at 15:08:07 I can't blame you one bit Ana!!!   I had a really close call myself today!!   PERFUME!!!!   And it took me by total surprise because I'm not usually sensitive to smells.    My youngest spilled some perfume and it overtook me!!  I got a stomach ache and the suddenly was incredibly weak!  I immediately went for the Allegra but due to how weak I was I had to lie down and them boom, I was in syncope!!!   I was out for over an hour before my elder son came home and he got startled when he couldn't rouse me!  He kept working with me until I was able to talk enough to tell him to take me to the ER.  It's rarely this heavy!   So as he was going to take me to the hospital my husband arrived and intervened.   He roused me enough to give me prednisone and Ranitidine 300mg.  Then as that began to help, I asked for more Allegra.   Then they left me to see how that would do, but it was still very strong and I was out again on the couch for another hour - a total of about 4 hours battling this reaction and even then, after an hour of this 2nd dose of allegra, I was better and able to sit up and had a real time of it though.   So, I called my dermatologist and told her what I was struggling with and she totally amazed me as to her response!   She didn't want my husband to take me to the ER, nor for me to take more prednisone or antihistamines!   She told me to take a spoonful of salt and rub it on my gums and the mucosa of my mouth and then take a spoonful of sugar a do the very same thing!!   SURE ENOUGH IT DID THE TRICK, slowly but surely bringing my BP back up and helping me to rouse. You see, this is the very rare reaction of prolonged syncope.  Most of us do NOT have this reaction and I seem to be the queen of it!!  It's caused by intense vasoplegia.  My poor dermatologist has never had a patient of hers react the way I did and it took us over a year of hard work trying to identify exactly what this reaction was.  We still don't know how to properly deal with it for there's no research explain what to do!!   But for now, I'm at home and keeping my antihistamines high and ready to crash out but I'm totally exhausted and fuzzy headed but I'm OKAY! So, Ana, I know how scary it is!  I go through it too!   But if I can give you some peace about this, remember, this is not true IgE anaphylaxis.  Yes, our reactions are severe at times, but they generally are not deadly.  We go through degrees of anaphyalxis and for the most part, we don't do the overall explosion that an IgE patient does.  In fact, research has shown that the MC can partially degranulate and this is what I suspect keeps us out of major danger - we don't get the full blown release which is what is so deadly.  Plus, the fact that we are constantly reacting means we are on constant medication which helps to prevent the full blown reactions.  I've noticed that unless I have something lie this which triggers a major reaction, my anaphylaxis has diminished in intensity with the improvement of my medication regimine.   And even with this reaction today, I didn't have my customary dyspnea or abdominal pain.  I did have constriction in my esophagus for a bit, but even that diminished and I've never had it constrict so much that I can't breath.  If I'm understanding the processes correctly this would indicate that my MCs only partially degranulated.  And my quick action kept the snowball from turning into an avalanche.   So, Ana, I know it's really freakingly scary, but as long as you keep your emotions tightly under wraps and not allow them to take a part of the party, you will get through this!!   A bit worse for the wear, but you will manage! I'll be praying for you! Lisa

Title: Re: anaphylaxis Post by Anaphylaxing on 10/05/11 at 16:26:19 Oh my gosh Lisa! That is SO scary. I'm so glad you are okay now. I wish your country would fund a trip for you. I don't know for sure if mine will be covered yet but I am really hoping. I will pray for you too! It means a lot to have prayers from Brazil. I think I am going to take the risk and fly---like you said it's over faster. Ive had to stress dose my steroids for this fever so I'll just do the same for flying and hope for the best. If I get really bad, then at least the trip isn't too long.

Title: Re: anaphylaxis Post by Anaphylaxing on 10/08/11 at 10:00:38 I'm in hospital and scared! My heart rate is too high, had a fever, and new rash/flushing--rash came on the day I started a new med and a new potassium supplement so I should probably stop both They've increased my steroids in case it's all because my adrenal glands are failing but I'm still having symptoms I took an extra reactine today at noon like I know you mentioned you to Lisa because the doctor's here have no idea and it seems my heart rate's worst with the rash so I figured I'd give it a shot because I need to get on a plane in a few days without medical supervision and I'd like to see if I can get a handle on things After MUCH fighting between doctors, which sent my heart rate through the roof, it seems as though the government might fund me to go next week. Let me know if you have any tips and I'll keep you posted

Title: Re: anaphylaxis Post by Enko on 10/08/11 at 10:08:52 Hold on Anaphylaxing! I wish if I would have something useful to say, but I don't :( Hold on! Lisa, sorry, I didn't know that you had such a bad day :(

Title: Re: anaphylaxis Post by Anaphylaxing on 10/08/11 at 11:52:03 Thanks I am so scared, but just want to make it there an hope they can help me

Title: Re: anaphylaxis Post by Lisa on 10/08/11 at 14:54:47 Ana, have your doctors tried speaking with either Dr. Castells or Dr. Akin?  They really should prior to your getting on a flight.  That tachycardia is a real concern!  The problem is that not everything can be blamed upon masto even though it would be easy to do so!  Yet it sounds to me like you've got something MORE happening, something triggering that fever.  Have they checked you over for infections or some kind of bacteria or virus perhaps for these things will also trigger the masto.  It's the Masto double whammy, you get hit by the truck which is the infection or virus and then it rebounds by triggering the masto and you take a beating with it too! Yet, here's another thing, Ana, not all of us react well with our antihistamines.  My dermatologist played with mine about 7 or so months ago because the combination of the H1 and H2 blockers had a beta blocker effect with me and was giving me bradycardia.  I've always taken allegra and ranitidine and I respond very well to both, but at the doses I was taking, this was what created trouble.  It may be that this could be part of the problem, however, without a doubt, your emotions have a role here.  Your fear and anxiety is a HUGE trigger!  When I was hospitalized for my surgery last year they were constantly catching hypertension with me.  Welll, I'm NOT hypertensive, but when I'm reacting, the masto kicks in and is what makes me hypertensive.   My doctors, whenever they test my pressure in their offices, depending upon the doctor and how comfortable I am with that doctor, will catch either normotension or hypertension!!  It's a real joke because they never know what they're going to get with me!  It's all the masto. It wouldn't suprise me that the tachycardia is due to the reacting and as you saw, in getting into an emotional situation which made you even more anxious and scared, your mast cells degranulated, thus causing more tachycardia.   It's interesting Ana that we are all so very different for although I have palpatations, my tachycardia doesn't come during reacting, it will come at other hours!  My holters have caught my heartbeat up as high as 120 bpm and as low as 41bpm!  and not at hours when I was reacting!  I've been seen by doctors while on monitors with tachycardia happening while reacting, but most of the time they say, Hmmm why isn't your heart racing???   Gosh, like I'm going to know that answer!!!   We're all kind of quirky this way.   However, I'm sure that you and your doctors are frustrated, for you say, "I'm taking the meds for the tachycardia, why aren't they holding me?"   Well, the answer is because when you're reacting, the meds do hold you, but, they can't combate the rush of the mediators.    This has also had my doctors scratch their heads with my hypertension.   I take the meds all the time to help give me some protection, and to help with the arrhythmia, which they do.  However, you get me into a crisis and my BP is going up and it doesn't care what medication I've taken!  It's going to respond to the chemical explosion going on inside of me, period!   This is exactly why your doctors aren't seeing anything working.    Perhaps there's a need for some kind of anti-anxiety medication, just to be able to work on the stress mediators coming out of the brain.   They have an incredible impact upon mast cells! However, again we can't just blame the masto for everything.  I can't help but wonder if there is something else going on for you to be doing all of this reacting like this.  But if everything checks out, then the one major thing that I think has to be considered is that perhaps you are reacting to your medication, which can indeed happen, or you've gotten your anxiety levels so cranked up that they are causing all of the degranulation to get you back into the hospital.   So, what to do then?   Since I'm no doctor, Ana, what I suggest is that you, yourself, write to Dr. Castells or Dr. Akin explaining what you are going through and what your doctors are planning to do and ask if they would kindly speak with your doctors tomorrow morning ASAP and see if there is any advice or guidance they can lend.   You're in no shape to be taking a long flight, especially alone!  Your husband has got to accompany you!  You're just too unstable and be it overland or by air, the stress of the flight is enough to trigger you.  Also, you must have a wheelchair service arranged from the door of the airport all the way to the exit of the  next for the walking around is just way too much for any of us! So, if you can, write to Dr. Castells or Dr. Akin tonight please.  I'll give you their email addresses.  I'm certain that they will do what they can to help you! I hope this helps you! Lisa

Title: Re: anaphylaxis Post by kimtg68 on 10/08/11 at 15:50:43 Ana and Lisa, not sure if this us helpful or not. I'm no where near as educated about mast cells as Lisa is but when I saw Dr Afrin and was going over my current medications, when I shared I was taking now up to 150mg of Toprol for mt Tachycardia and had only just been diagnosed back end of January/first of February this year and was started on 50mg Toprol but we can't keep it under control long, his response was, "good luck with that" which I interprited as...we wouldn't be able to get the tachycardia under control until we get the mast cells under control. I base this on the context of our conversation. However, anytime your heart is straining this causes possible damage so wherever you can find relief is a positive. But Ana, I think with your situation that other reasons for this really need to be explored and hopefully ruled out. THEN you can look toward mast cells trying to get them under control! Please be careful and Make safe healthy decisions for you! Kim

Title: Re: anaphylaxis Post by Anaphylaxing on 10/08/11 at 19:16:02 I think the best thing is to get me somewhere where people know how to deal with this, the problem is, will I survive endure the flight given my reactive state?

Title: Re: anaphylaxis Post by Lisa on 10/09/11 at 06:30:47 If you premedicate with the REMA protocols, yes, you can do it!!!   I have! 8-)

Title: Re: anaphylaxis Post by Anaphylaxing on 10/14/11 at 15:14:13 They want to do BMB I'm scared with my tachy and high steroid dose that it is risky to do it and that I might react to it ideas? Flying was a breeze ps!

Title: Re: anaphylaxis Post by Joan on 10/14/11 at 20:12:35 Again, if you do the Rema protocol before the BMB, you should be fine.  I asked for some Ativan, too, to take before.  It helped me feel calmer and less worried.

Title: Re: anaphylaxis Post by Anaphylaxing on 10/15/11 at 12:10:44 the docs here are saying I dont need to up my steroid or anything I thought I should be on some protocol

Title: Re: anaphylaxis Post by Anaphylaxing on 10/15/11 at 12:11:09 I think they might use conscious sedation, had anyone had that?

Title: Re: anaphylaxis Post by Lisa on 10/17/11 at 01:52:00 According to the masto experts, conscious sedation is the best way.  My doctors haven´t read this yet, though!  Before I know it I´m history and waking up again.  :-/

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