Hi Wendy,

I'm new here too, I was diagnosed with Systemic Mastocytosis about 7 years ago. I just posted under the thread "Can someone have mastocytosis and still have negative blood tests?" & then saw this post. I have suffered from severe headaches with this disease but my current "pile" of medications seem to be controlling the headaches pretty well, I still get headaches just not so bad. I know that names of meds are quite often different in US to Australia but I'll list their drug names where I can.

Telfast - Fexofenadine 180mg 2 x day
Nalcrom - Oral Sodium Cromoglicate 200mg 3 X day
Pyralin EN - Sulfasalazine 1000mg 2 x day
Brufen - Ibuprofen 800mg 3 x day

Aspirin - 300mg per day ( I have a circulation problem & take this to prevent blood clots, doctors not sure if its related to SM or not, some people with SM react badly to aspirin so suggest you check with doc before taking this)

Zaditen - Ketotifen 1mg 2 x day - This drug was brilliant at stopping all itching & improved headaches heaps but I gained 5 kg in 5 weeks while on this, it also made me very drowsy so I have stopped taking it.

I find the Brufen the best for dulling bad headaches & it's good for bone/joint pain that I often have but again it is a NSAID & you need to check with your doc.

I also go to the hospital every 4 weeks to have intravenous Intragam - immunoglobulin this treatment has taken my life from utter hell to bearable.

I go on and off several other drugs including Prednisolone and have trialled dozens of different meds. I know some people with SM take a mast cell stabilisor called Singulair, my doctor tried me on it but I had a severe reaction to it that nearly killed me.

What works for one person doesn't always work for someone else, talk to your doctor & keep trying different meds until you find something that works for you. My meds haven't stopped this disease & they haven't got rid of all my symptoms but they have made life bearable.

Ok this is getting a bit long, sorry, if you have any questions I'm glad to help,

Cheers Bronwyn.:wave:

Hi Chris & Wendy,

Wendy it’s good to see you posting here again. I’ve been really unwell, still am, but have been checking here occasionally to see if you had posted. How are your headaches? Have your docs been able to help you yet?

Chris I’m glad you found this site; I agree that chatting with people who actually have masto can be so much more helpful than reading about it. I do read lots about it though, especially medical journals, partly to educate myself & also so I can educate my doctors. The reality is that very few doctors know much about this disease & the few that actually treat anyone don’t have the time to keep up with reading recent research. I often print out journal articles & take them to my primary specialist (immunologist/rheumatologist). Most docs wouldn’t like this but mine is pretty down to earth.

Chris I've just read most of your other posts & realize Wendy has probably answered most of your questions already but thought I'd add a few bits of info, sorry if any of this is repetitive.

Wendy sorry I have to disagree with what you have said about TMEP, please don't take any offence.

I have TMEP (biopsy confirmed). There really isn't a lot of info around about TMEP but most references to TMEP say that it is rarely systemic, that it does not itch, that it is not positive for Darier’s sign (swelling if scratched) & rarely causes flushing, diarhea & other systemic symptoms – for me NONE of that is true. I was diagnosed with Systemic Masto before I had any skin lesions at all. I get severe flushing, headaches, diarhea, and tachycardia. My lesions itch like crazy, swell up all the time & go blood red.

TMEP is supposedly only found in 1 % of all mastocytosis patients, it is the rarest form of skin masto. BUT I have already met (internet) 1 other person with TMEP, he does not have systemic masto & now you Chris, so I’m thinking it is not as rare as they think. I doubt your dermatologist would have said it was TMEP if it isn’t; the lesions are quite different to Urticaria Pigmentosa, which I now have some of those too. Also the biopsy would have shown changes in the capillaries hence the “Telangiectasia”.

As for the PUVA I wouldn’t waste your money unless you want a short-term cosmetic fix. It does not get rid of it permanently & I’ve read it can come back within a couple of months. Something that works just as well but just as temporary is getting sun burnt. No dermatologist will recommend it due to risk of skin cancer but I’ve let my arms & face get burnt occasionally to clear it all up for awhile. My entire back, chest, stomach & arms are covered with TMEP now but I have resisted getting my whole body burnt because I would go into anaphylaxis from the heat for sure. I use lots of topical cortisone cream on my skin, it helps reduce the redness, swelling & itching a bit but doesn’t get rid of it.

Chris I don’t want to scare you about the possibility of systemic disease but if I were you I would want to know for sure. Your tryptase being 22 is definitely elevated & according to the World Health Organisation (WHO) criteria for disease classification, that is 1 of the minor criteria for Systemic Mastocytosis (tryptase >20ng/ml) You need 1 major or 3 minor for the diagnosis. The only way to know for sure if you have systemic masto is to have a bone marrow biopsy & aspirate. This test is excruciatingly painful so think twice before having it. As Wendy said, the treatment probably won’t differ if you have systemic or not but your docs my be inclined to take your bone/joint pain more seriously & they are more likely to get you onto Gastrocom & some other medications if you do have systemic masto. I know Wendy can’t take Gastrocom but I do (Nalcrom here) & it has helped me. Us masto people all seem to have some bad reactions to some meds, but what reacts with one person works well with another person. I was tried on Singulair & had a severe reaction to it. You will only know how you react once you’ve tried the med. If you do get the Gastrocom give it time before you decide it's not working because it can take 6 to 8 weeks to get the full effect.

As Wendy said, you need to be on H1 & H2 antihistamines, keep trying different ones until you find the ones that work best for you & with the least side affects. You may need anti-inflammatories for the pain, some masto people react badly to them so be careful. Maybe get the epi-pen first, just in case. I also agree with Wendy about the alcohol, since you had trouble with it before don’t drink it again. You might want to get your iron, folate & B12 levels checked, especially if you have had bouts of diahrea. Malabsorption & anemia are common problems with masto. Even on daily iron tablets & multivitamins I have had anemia several times & have had to have a couple of iron transfusions.

Sorry if this was a bit long,

Bronwyn