I'm new to this site so I figure I will just jump in.

Short Story - As a kid I always broke bones (arms, legs, fingers, etc) and also had stomach issues (upset stomach, diaherra).  At age 26 the Urticaria Pigmentosa (UP) started.  I'm 38 now and the UP is still going strong.  It's really quite a bummer because I don't know if they will ever stop.  I'm running out of skin.

At 28 and after several dermatologists the spots were diagnosed as UP.  After a BMB I was told I have Indolent Systemic Mastocytosis.  My Tryptase has bounced around from 13 to 27.  I've seen Dr. Castells in Boston, Dr. Wilson at NIH, and Dr Weber in Denver.  I take Zyrtec, Zantac, Hydroxyzine, Singular, and the Gastrocom.  I've done PUVA (3 years 2 days a week) for the UP with limited success.  As soon as I stopped doing PUVA the fading of the spots returned within weeks.  

During my appointment with Dr Castells she told me of Midostaurin and that it might help me out.  I have also been told that Midostaurin is not for me.  Does anyone have any experience with Midostaurin?  Is it only for extreme cases?

Hi and welcome to the forum!

  It sounds as though you're really suffering with the UP.  Maybe others here with it will have some ideas for you.

  Midostaurin (also called PKC412) is still in clinical trials and not yet approved for use in indolent SM, as far as I know.  I've spoken to a couple of people who've been on the drug for about 2 years, and they were approved because they have ASM.  I'm sure Dr. Castells knows more about it than I do, but I don't know of anyone with ISM qualifying for the study.

  There's an article online, published by Georgia Health Sciences University about Ralph Brown, one of the patients:

http://www.georgiahealth.edu/cancer/clinical/trials/brownstory.html

  You might be able to contact him through GHSU.  

  The closest site for a Midostaurin trial, I believe, is Stanford Cancer Center in Palo Alto, CA.  Dr. Jason Gotlib, in the Hematology Dept. there, would be a person to contact about this.  He's a great doctor, in my opinion.

  There are a couple of notices on this forum about the Colorado support group and contact information for Jan Marie Smith, who is coordinating the meeting, if you think you want to attend.  Dr. Theo Theoharides is going to be speaking at the meeting  (May 5th), and might have some helpful ideas from his research.  A GI doctor who treats SM patients might also be there.

  If you have any other questions, feel free to ask!