Hi Tess,

We do have those here diagnosed with IA, Debbie is one.  

Depending upon your symptoms, your test results and your doctor, you may have ended up with a diagnosis of IA or not.  Some of th researchers used to diagnose IA when the patient couldn't fit into the WHO diagnosis for Systemic mastocytosis.  Some get this diagnosis when they can't show any proof of mast cell activation.  As of September, we are all waiting to know what has come of that meeting to know what is going to officially define what is the diagnosis for a mast cell activation disorder versus that of IA and other forms.  So, this is anybody's guess as to how it's going to be.

However, with IA, Dr. Akin's work on these patients proves that some of them are in truth SM patients because in spite of the fact that they could not find any kind of proof of mast cell activation, 1/3 of the patients had mutations on their genes with their mast cells!  So, for all basic purposes, IA is considered a mast cell disorder.  That being so, we are all treated with the same medications.

So, in saying this, gastrocrom doesn't work for everybody and this may be your case.  However, we don't all have to take gastrocrom.  I don't because of how expensive it is.  However I take ketotifen which you can get in Canada.  Just ask your doctor for it.  As far as the fatigue goes, Tess, I've found that ever since I was put on Singulair, this is the medicine which has given me back a great deal of energy!  To the point I almost feel normal once again!   I would suggest that you take this!

As to having issues towards the end of the day, are you taking antihistamines twice a day or only once?  When I was on them only once a day, this wasn't enough and by the end of the day I was triggering left and right and quite miserable.  You also may need higher doses of medications.  So this is something to talk over with your doctor!

Hugs!

Lisa

Hi! Yes, I am your handy dandy IA person, also diagnosed by Dr. Akin. I have plenty of info to share on IA, but I am headed to bed now. (Yawn). I promise I will come back in the morning and write you a proper response!

Good night all!

Thanks Ramona - Oh I forgot to say I have been taking prilosec and it works very well.  If I stop it, I always have to start it up again.  I will ask about Singulair when I go to see Dr. Akin in March.  I am very lucky to live in Massachusetts and have these doctors nearby.  I hope you get some answers working with the NIH.  I know you go through so much when you have an "event."  I have the same experiences with anaphylaxis.  I have had this all my life and was just diagnosed three years ago and I'll be 56 this year so you can imagine how many doctors stood there scratching their heads.  I'm so glad I found you all.

hi all RESEARCH IN INHERITED MAST CELL DISEASES
I put it in the research studies and trials on this site could some one put the link to that site do this for our KIDS

Hi Tess ,

I completely understand where you are coming from . I have thought the same . My feeling is that it is either a biggie warming up , finishing off or daily lower histamine symptoms than anaphylaxis . I have 3 ways epi pen reactions happen . fast -0-100 in 3 mins max . medium , itching , flushed in cycles around face , hair , chest , body , mouth , stomach for up to an hour , then fast into chest and throat closing . and slow itching for hours , slow swelling sometimes stopping , then coming abck up to 6 hrs later .

I can send you my naughty list if you would like to see it . i have replaced some things so its not so bad . My food was so dry , so I have creme friece on sandwiches which makes life better . i ahve found patai starch works for me , so I am managing home made gravy xxxxxx

We make home made jam and other sauces with lemon juice to replace vinigar . It even works on home made chips , in olive oil only xxxxxxxxxxxxxxxxxxxxxxxx

You may benifit from liquid meds as most contain corn starch . Since swapping my bowel is less painfull and swollen .  Antisickness wise as i also suffer from nausea and bowel spams going back to my stomach , I use cyclizine . It is an anihistamine antisickness .

Metroclopamide ( maxalon ) can contain sulphites . This gave me trouble .

Connective tissue pain is common for many of us . But you in good company . Cool baths help my back and legs . I know im in for a vomitty day if my joints are painful .

Ranitidine ( zantac ) had revolutionised my symptoms . I do think you are undermedicated . I found it hard that I need so much medication just to get by especially when I was still very poorly day to day . Now im on a good level that means I am more with it and in less pain . Also when I am getting poorly I can manage most symptoms now . I have found that an epi pen level reaction will be even with meds as my outpouring of mediators is too much for my orals , but the dosing helps me not get as ill and helps me recover better .

I am looking into other H2's as I am needing simvastain ( cholseterol ) and will ahve to swap to another one

I don't know if singulair is possible for you . But it has helped me . In 2 major ways . better breathing , less wheezyness  and less swelling . It is swelling for me which gives the pain . You can loose 2l before it shows as obvious swelling but this will cause your tissues to expand and press on nerves and you lymphnodes to enlarge and cause pain . My bowel swells to give me abdo pain .

I can reduce some swelling with gentle massaging of fluid back towards the heart in small circular motions .

The chronic pain wars me down . I have to do what my body wants , then I get some time to think streight . I can send you my pain scale as well . Do you know how pain works and which meds do what
hugs
I hope you are having a good day
Josie

Quote:




Josie, I don't understand how you can say you've not been diagnosed yet.  You have been dear, Dr. Grattan gave you his diagnosis as angioedema, right?   He's only got to define what kind it is - if it's the MCAD angioedema or angioedema in it's own right.   But you don't need to think you don't have a diagnosis, for he's too high of an authority to question his judgment.  

Yet, remember dear, you can have more than one issue going on here.  Another thing is this, due to the recent research of Dr. Blanco, his findings of aberrant mast cells is very important.  Although fibromyalgia can't be considered as a mast cell disorder in and of itself, any more than Interstitial Cystitis can be considered a masto disorder, it doesn't mean that there's not a connection there.  Obviously something is going on with the mast cells within both disorders, this much they know.  Also, there are many masto patients who have comorbid combinations of IC or Fibromylagia along with their masto.  What creates the confusion for the researchers is that there are plenty of these IC and Fibromyalgia patients who show absolutely no sign of symptoms of masto and so they can't come out and say that these two disorders are part of a mast cell disorder, they remain seperate entities until research proves their connection.  However, that doesn't mean that for us masto patients that these disorders are not coinciding within us for way too many of us have either fibromyalgia or IC or both.  There's a connection there but research needs to prove where and how.  They know the mast cells are involved and in both the MCs are proven aberrant in some patients.  But this is all they can say.  

So, although you've got some form of angioedema, it doesn't mean that your fibromyalgia is not part of your disease.  

I would suggest that you show Dr. Blanco's recent work to your doctors and ask them if they think it's worth doing a skin biopsy and then staining those tissues as according to HIS methods for apparently the mere staining with tryptase won't reveal these aberrant MCs.  He said that it was the staining of proteases along with tryptase that revealed the aberrant cells and not just tryptase alone.   Your doctors are going to need to speak with Dr. Blanco in order to see how he did it and they may even have to send your biopsies to Spain in his care to get it done properly since this is brand new research we're talking about.  

Doing this, Josie, may help to reveal what is going on with you and may be what you need to connect these two things together with you.  It's certainly worth a consideration.  

But, for now, Josie, until Dr. Grattan and his colleagues can do more investigation defining what form of angioedema you have, you do have a diagnosis of that along with the other issues - they are comorbid and considered seperate entities until you can prove the connection.

Lisa

Hi Lisa ,

Drr , yes I do have a diagnosis . I think I wasn't letting myself believe it because it has taken so long and we need to hone down the reason . I couldn't get excited about having an answer . BUT I have  xxxxxxxx

I was also reffering to idiopathic anaphylaxis , feeling I didn't have a diagnosis there . But with upper airway compromise - tounge , largangeal I do fit a category of Dr greenbergers definitons of IA

Which I have known i have had for a good year xxxxxxxxxx

So this final tweaking will get me to a point I have a useful diagnosis .

I don't completely disregard my fibromyalgia . I am just aware that it was diagnosed early in all this and all my fibro symptoms have other explinations now as I said My other fibro only friends have been questioning my diagnosis from the outset .

Regards the depression . I am not depressed now . How do i know ?? because I have been . I know my warning signs and am not shy of anti depressants . I have had several things happen . I was bursting into tears for no reason , not sad , feeling ok . It was because mt steriod levels were low . When it was sorted i stopped bursting into tears .

I said to the doc's . I know I am bursting into tears but I am not sad .

For me , I am depressed if I can't give myself a talking to . You know the pull yourself together talk

The other thing that happened we I stopped opening up to docs about my normal feelings about all that is / has happened to me as they were unable to find an answer and too willing to label normal coping and sorting feelings as depression . It is only now that I am believed and yes , have a diagnosis , that I can trust that docs wont make my feelings and fears to be depression and anxiety and my symptoms psychosomatic .

I have even been over old reactions to make sure i wasn't panicing . I didn't think I was but I needed to check . I had a lovely nurse talk to me about her panic attacks , and I explained how I knew it was my illness not a panic attack she saw that at times it is hard to get our point accross with docs/ nurses who are set in their view point without being pre judged .

Some of us do experience anxiety as a part of our symptoms , a throwback to needing to be on high alert when we lived in caves . And we are at risk of depression with the changes in our lives . that does not make our whole illness either

hugs Jose

Tess xxxxxx

Pain management :- hmm , yeah . With IA , mcas or masto we have symptoms and consequences of histamine and other mediators which can cause pain .

Mine is mainly swelling related . My bowel swells to the point I can't take a deep breath in ( wince ) or touch my stomach at all . I have constant lower back and upper right sided pain . All scans have proved negative for anything nasty

I also have musule spasms in every group at different times . The most troubling are my stomach ( abdo ) bowel and stomach . Bowel spams sometime raidiate up to my stomach and cause vomiting ( once or twice a week ) and down to frequency with rebound pains . These are better now I am not irritating my bowel daily with troublesome foods for me . Corn and gelatine , alcohol , any vinigar , caramel colouring , sulphites  

The spams are due to my bowel being swollen inside and my body pushing to move stools along . Smooth muscule is also contracted by chemicals in our inate immunity - compliment sub chemicals - 3a 4a and 5a . these are anaphlatoxins . So these don't help Also histamine release in the bowel and stomach from mast cells there can cause spasms .

I am trying loperamide at the mo , with ok results so far .

I was taking codine which is known to destabilise and degraualate mast cells . So this has gone now .

I have tried buscopan . it made me a little sleepy as it interacts with our anti histamines . But i was post shock so the sleepyness ( like a baby ) may have been due to that .

We are a bit stuck for analgeics . As moprhine salts / codine are a no , non steriodals can cause problems , tricyclic antidepressants are a no with EPI PENS .

Tramadol is used by some people on here .I think it is the analgesic of choice ( ramona ?)  

Unf I don't know if I have problem with Tramadol itself . As I have reacted , but its preperation at the time was the trigger . I am going to ask for efferecant and try some in clinic ( with docs ) because if I can have it in that preperation then it did help my pain .

Tylenol / paracetamol . is Ok , but rather weak . the focus should be on treating the cause of the pain

Benzodiazipines are tolerated mast cell wise . They can help relax the musules and reduce any anxiety

Gastrocrom should , when fully in the system prevent mast cell activation in the bowel and allow it to heal . I am not on this yet .

I am on singulair , which has helped a great deal . But more with my breathing . Some of my musule pain is / was due to my musules not having enough oxygen and working anerobically ( no / low oxygen ) most musules can maintain this for a time . But they produce lactic acid which causes cramps . So the singulair works to help my airway symptoms and as a consequence I have more oxygen circulating

All of our tissues are capable of swelling . This is also true for musule , so some aching is due to extra fluid. the other contributory factor is swollen anything pressing on nerves . also our lymph systems are draining the fluid away to be rechanneled back to the kidneys . So enlarged lymph nodes can be pressing on nerves


H2's help block the histamine receptors in the stomach . Since being on ranitidine I am less swollen on my abdo and crucially have less internal bowel swelling and flushing . As a consequence I have less back pain

My daily management of pain is :-
comfort :- sit comfortable with your legs up
exercise mangement - I swell with exercise so pace myself as I will continue to swell after I have stopped . I am shaky on my legs so do what I feel I can . Too much exercise will lead to me vomiting , swelling and flushing .
Distraction :- up to 5/10 i can normally distract myself .
Warm baths - not hot xxxx will relax my musules . But the exertion will make me shake . ( legs )

I am a hot bod :-
I use cold ( from tap not freezer )  flannels to keep my pressure points ( temples . wrists ) cool and on areas that are tingling as for me , this is a sign of impending swelling .
I sit under a fan . I have to be cool to the touch to be a happy temperture inside If my back is hot , the fan on it will cool it

There are some cold suffers on here . I hope they will chip in for tips from their side

Dehydration is my biggest problem . If i get dry I will shake more ,not just feet but head as well ,  swell more .

You can loose 2 litres into your skin before you will notice swelling . So if you are feeling dry , you most likely are

I have developed my own pain scale on 1-10 which I take to hopsital as chronic pain is very under assessed . I am working on a new tool for nurses to asses chronic pain alone and in the presence of acute pain

Deb is the one to ask about motrin . i don't have any expiernece of it

Foods wise . Could you post a list of what you are eating and what you are avoiding and reasons . That way its easier to see your triggers Are you apprehensive when eating ? As a conncetion between emotional stress chemicals and mast cell degraulation has been found

I have worked out my food triggers over time , as I reacted to different things with common ingredients . The best example is gelatine :- capsules + pre gelatinised filler  ( tramadol ) ,then a pork pie , then medical examination gel , then cardiac stickers

hugs
I hope today finds you well
Jose