Mast Cell Disorders Forum - TMEP - Telegtantasia Macularis Eruptiva Perstans

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TMEP - Telegtantasia Macularis Eruptiva Perstans (Read 2935 times)

DawnFLA

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TMEP - Telegtantasia Macularis Eruptiva Perstans
04/08/11 at 05:04:03

Hi my name is Dawn and I was diagnosed with TMEP when I was 19, I am now 39. I have not seen much on TMEP on here nor is there much about it on the internet. I have severe itching which gets worse with any ind of heat, hot showers temperature above 80 degrees, etc. I used to think I was allergic to myself. I take singular daily and get weekly allergy shots, in doing this I have noticed I do not itch as much but I still itch. I have a weird rash that appears all over my body, they are tiny bumps that come and go. I also have flushing and night swests. Does any one know anything about this disorder? I was told by my doctor that TMEP is the rarest form of mastocytosis, like a ghost disease. Please advise. Thanks

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Riverwn

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Gainesville, Florida

Re: TMEP - Telegtantasia Macularis Eruptiva Perstans
Reply #1 - 04/08/11 at 05:22:03

Hi Dawn and welcome to the board!! Im thrilled to have another Floridian here

I dont know a lot about TEMP but its another form of Masto and treated exactly the same--by symptoms and relief. I have 2 areas on my back that I wonder about sometimes--like little broken blood vesicles that itch terribly --apart from my spots.. and it often feels like ants running under my skin.. does that sound familiar to you?? Ive often wondered if it was tmep but i forget to show the doctor LOL..

I know you treat it like any other form of Masto.. and that you need some more antihistamines or you would not be reacting every day with the flushing and rashes. Talk to you Doctor about adding either another H1 or H2 blocker OR making your meds twice a day. Let us know how it goes, if that does the trick ok??

I think there are about 4 people now that I know of in Florida with Masto... maybe we can start a chapter here! We could meet sometime if possible and do lunch LOL.. Im near Gainesville in the woods near Ichetucknee River. What part of the state are you in??

It is absolutely GREAT to have you here!!
Hus,
Ramona

~~~Count Your Blessings!~~~

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starfish

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Ohio

Re: TMEP - Telegtantasia Macularis Eruptiva Perstans
Reply #2 - 04/08/11 at 07:31:45

Hi Dawn, I also have TMEP. I describe my skin as feeling as though it is melting. I take HYDROXYZINE at night which is very helpful...however it can knock you out....and sometimes that isn't so bad lol Other meds I take are allegra, Gastrocrom, and Omeprazole. These are helpful eliminating the symptoms. However the heat/cold continues to be a problem. Eliminating some foods ie cheese, alcohol, spicy, to name a few. My rash never goes away, and contines to spread. At the moment I am extremly discouraged and wonder what it is like to feel "well". Did you have a BMB? I did last year, to determine the systemic aspect of the disease. No surprise...it is systemic for me. My tryptase is in always above 100 and almost 200. Nice to hear from fello TMEPers.

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