I have been diagnosed for about a year with mastocytosis. The journey began with an anaphylatic reaction. So I went to see my friend who is a Allergy doc and he perscribed the epi pen, and kit in case this happen again. A series of skin test later, we only found sensitivities, abnormaly low triptase levels and IgE levels. Bone marrow showed nothing , which was good. I have those reoccuring spots on my arms that feel like a bee stung me and itch like crazy and then stop and then come back in the same place( I dont even know what that is called...). Through the years I have had various reactions to a host of things, most notably latex and shell fish.
The most frustrating part is my lack of energy. I am the sole parent of a seven year old and some days I can barely find the energy to talk.
Right now , I am on Claritin 20mg/day, Singular 10mg/day, Premarium, nasonex, zantac...when I remember it. Most days are good, but the bad days are becoming more frequent. I feel really old at 42. The heat right now is very hard on me. But I have to work So I am in and out of it all day!! Ugg.
I also find it is really hard to explain the illness to people around me. I have stopped even trying to explain.
It has been a rough couple of years. As a side note to the females ..I had severe endometriosis, which finaly I had a full hystorectomy. I guess I have read in some journals that endometrosis could be a manifestation of mast cells in the uterus??
By the way the spell check does not work and I am a horrible speller, please forgive..
OH yes, I forgot to mention that I did have a colonoscopy w/ biopsy for mast cells and that is positive. But it did rule out celiac.

Hi Jen!!  Welcome to the group!!   Sorry I didn't pop in here earlier!!


Listen, as to that fatigue and your meds, I think you're needing more and better ones.   Claritin isn't really used by most of us.  I don't think it seems to be so very effective.  If you could exchange that for Allegra 180mg it would be better.  Yet, you are also needing higher doses.  You're undermedicated.

Last year I was really struggling but then Dr. Castells took my meds and doubled them and added singulair 10mg to the deal.   So, she has me taking Allegra 180mg 2x/day, Ranitidine (zantac) 300mg 2x/day and singulair 10mg 2x/day.  I also take Ketotifen 6mg at night.   The singulair is a great addition and has helped to reduce my anaphylaxis impressively!  And when I've been off of singulair for a short period, I've shocked, so it's a definite improvement!!

I think if you could follow this regimine, even for just a few days to see if it helps, I think you would find that your fatigue and other symptoms will melt away!!

I hope it helps!

Lisa