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anaphylaxis (Read 27602 times)
Susan
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Re: anaphylaxis
Reply #15 - 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!
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Susan

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Lisa
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Re: anaphylaxis
Reply #16 - 09/12/11 at 06:24:05
 
Hi "Ana"   Iīm glad to see that youīre improving.  Sorry Iīve not gotten on earlier, Iīm still dealing with work and computer issues so itīs kept me with only a few moments to be able to hop on here.  


Iīve got a history of very severe reactions to contrast.  Iīve 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.  Itīs 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 heīs an expert in carcinoids.  

Now as to the continued reacting, this sure does sound like masto, but then I donīt know if carcinoid patients do this or not, so donīt 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 youīve 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 heīs 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 - Iīve got a really cranky case of masto and it came roaring to life!  I can litterally tell you the day it woke up and itīs like I had my doctor play Frankenstein with me and he gave me some other womanīs body with his surgery!!!  Thatīs 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.


Iīll get back to you if my doctor replies to my question.
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Re: anaphylaxis
Reply #17 - 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.
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Re: anaphylaxis
Reply #18 - 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.
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Re: anaphylaxis
Reply #19 - 09/13/11 at 16:02:19
 
Hmmm, where to begin!   Wink


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
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Re: anaphylaxis
Reply #20 - 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.
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Re: anaphylaxis
Reply #21 - 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 wonīt 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?  Iīm wondering if you happen to be living near a masto specialist without knowing it!!  At this moment, Iīm 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.  Iīm going to email my doctor and ask her, but itīs going to take a little bit to get an answer from her because sheīs 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 Iīll 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 itīs 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! Shocked

If your doctors havenīt been jumping through hoops yet, then BE AT PEACE, the chances are youīre not with anything life threatening.  It doesnīt mean youīre not suffering greatly and that youīre not in a bad spot, but itīs not going to kill you any time soon!!   So, this is why youīre 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
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Re: anaphylaxis
Reply #22 - 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

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Re: anaphylaxis
Reply #23 - 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!!

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Re: anaphylaxis
Reply #24 - 09/15/11 at 00:39:16
 
Thanks for the nice words!!  You are very kind!


Tell me, where are you living right now?   Itīs very possible that you are living near a masto specialist and donīt 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 donīt 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 heīs looking for, he wonīt find it.  And even then, itīs 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 youīve been through and some of your symptoms and letīs see if some of us can help you gain more direction and help.  

By the way, donīt get discouraged, dear, you WILL find your answers.  Weīre a pretty good group here helping to keep the ball rolling and even if you find out itīs not masto, we can still help to encourage you until you do find out what it is!!!

Hugs!!

Lisa
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Re: anaphylaxis
Reply #25 - 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.

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Re: anaphylaxis
Reply #26 - 09/15/11 at 15:38:49
 
Ana,
I went back and saw your meds, and I forgot to tell you mine.   Youīre 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
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Re: anaphylaxis
Reply #27 - 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.
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Re: anaphylaxis
Reply #28 - 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 didnīt 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 wantīs 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!), weīd never have gone looking and never found the aneurysm!  

When I say you sound like me Iīm 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, hereīs 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 itīs a derivitive from snake venom but when we used Adalat at another point in time, itīs a known MC stabilizer, so itīs 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 isnīt due to the medication, but itīs effect, the stress upon bringing my pressure down way too quickly!!   This is stress anaphyaxis.    But the mere fact that when Iīm 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 isnīt a heart problem in and of itself; The cardiac issues are a symptom, not the cause.  Deal with the masto and youīll take care of the cardiovascular problems it causes.  The holter is a good idea and see if theyīll 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 donīt dare step outside past 9AM or before 5PM and even then, I need to take an extra allegra before hand or Iīm 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!  Weīre 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 didnīt 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 DONīT HAVE IT!   If you had, then when they gave you the epinephrine, you would have gone into the Carcinoid Crisis.  Youīd 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 - ITīS 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 youīve done IgE testing and thatīs 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.  Itīs proven to be a very important diagnosis for me and it proves that my masto is indeed autoimmune.  My doctors suspect Iīm an MMAS patient - that I do indeed have the clonal form of the disease.  Itīs 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 Iīve 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 Iīm the kind of patient where I donīt want a single stone left unturned.  You canīt confront the beast if you donīt know what he looks like and you canīt fight a hidden enemy.  Knowing if you have a positive ASST test will possibly open up doors for future treatment.  So far itīs not opend up doors for me, but my doctor is still struggling to find answers.  We canīt 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  youīd 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.  Itīs worth a consideration anyway.

As to the pulmocort, this works due to the cortisone. Yet, there is an inhaler with epinefrine, isnīt there?  This would be BETTER!!!!  On some masto patients the cortisone doesnīt 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 wonīt 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 wonīt need the cortisone, I PROMISE YOU!!   Although Iīm 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.  Itīs 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!!!

Iīm 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
 

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Re: anaphylaxis
Reply #29 - 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.
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Susan

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