Hello,

I've been diagnosed with TMEP 1 year ago.
I had pink spots on shoulders, arms, and near the genitals since 7-8 years now, i'm 36 but so far it looks stable, it's not expanding in the rest of the body.

They proposed me a PUVA therapy but i had no time to make the 30+ sessions, maybe in the future, and they also made clear in most of the cases it's only a temporary fix.

On the other side, nobody told me my TMEP could evolve into a "sistemic" mastocytosis and now i'm a bit scared.

I would like to hear from fellow TMEPers if this could be a rare occurrance of the chances of a sudden worsening of my pathology are high.

My TMEP has been spotted after going to 4 different dermatologists, the last one finally made a biopsy and sent the sample to their lab.

However, they didn't checked my "triptase" count and i never did it so far, should i do it soon ?

I have TMEP too and have heard the same thing about it turning systemic. It bothered me too at first but I don't think there has been a REAL study on this. So I have calmed down in regards to that. I have sytemic symtoms like bone and joint pain, digestive problems, I can go on and on. There is times where it has been real bad and there has been times when I could exercise 6 days a week. There are people on here that have systemic masto and exercise and live farely well as low as they follow the low histamine diet and take their meds and get rest and reduce stress. This is how I look at it, if I had systemic masto I would still take the same meds around the same dose and I would still have to avoid the same things and take the same precautions. I have had my tryptase tested and it was 3 or 4. Hope this makes you feel a little better.
Melissa