NRAS
21,777 members25,414 posts

Mastocytosis

Do any of you have mastocytosis? There's a possibility I may have it! They'll have to run a test and are looking into it, but great uncle and now my mama have been diagnosed. It is passed on genetically. If I do have this it could great chance some things with my eyes. I am allergic to many things and asprin is a big no no. If I can take it, (the docs will have to do a slow increase that will help me tolerate it, it can aid in reducing my inflammation which I turn will help work with my other Uveitis meds and possibly put me in remission!

I'm still gathering all the info as I am learning about this.

2 Replies
oldestnewest

Yes I have systemic mastocytosis , first diagnosed in 1989 but confirmed around 2002 after a major anaphylactic shock episode which resulted in my being admitted to hospital where I spent the night on adrenaline and oxygen!

I take two antihistamine tablets a day an H1 blocker which is cetirizine and H2 blocker Ranitidine.

There is a wonderful group called the UK Mastocytosis society who are incredibly knowledgeable and supportive, if you do an internet search you wil find them and be able to join . We have an annual meeting too when we all get together and split into our respective groups , MCAS, MCAD, UP etc .

Research is ongoing but Masto is still low on the national research priorities of the UK in spite of its debilitating effects ( in some cases)

Also different regions have different specialists, some more knowledgeable than others, you would be advised to self educate too because many GP's are still not 'au fait' with the disease.

For those of you that are unaware of this illness , mastocytosis is a disease of the immune system where the body produces too many mast cells causing bone pain and flushing, stomach pains and many other symptoms. However the main problem is that when the body gets overloaded with mast cells the immune system goes into overdrive and over produces histamine leading to anaphylactic shock( I always carry an 'epipen' .

Hope all this helps, may bump into you on the Masto site or at the annual conference.

Best wishes

Mike L

2 likes
Reply

Thank you!!! I'm in the US, but things are similar. I have rare food allergies, and am allergic to aspirin or any nsaids does that matter. More than that tho my mom is too and was given a rough diagnosis after a massive heart attack this week. If they hadn't called an immunologist in to talk about her aspirin allergy we wouldn't have gotten this information. In the process, her doctor says that j probably have it too. I've already talked to my Rheumatologist and my opthalmologist ( I see both for my unexplained Uveitis) and they don't know a huge amount about it. But Uveitis and Mastocytosis go together pretty easily. I'm learning more and more about myself daily and getting answers that I desperately need. I'm on three meds including a maxed out dose of mtx for my Uveitis and so far nothing is working. They would love to be able to give me an anti-inflammatory but as of right now I still can't. However if I could there's a chance that it could help me go into remission quicker.

Reply

You may also like...