I am really not sure what to say here so I will just post what I sent to in an email to become a member.  After almost 2 years, and traveling to several specialists, I have recently been diagnosed with systemic mastocytosis with UP. I have not had a symptom free day since July 2010.  I was on predisone and have recently stopped taking it due to the side effects of long term use so I suffer with swelling, itching, bumps, bleeding postuls and GI issues daily. The pain in my joints can be so bad that I can't walk.   I have recently started taking Gastrocrom (was very difficult to find and very expensive but health insurance did cover it) and it has helped with the GI issues and chest pains. I take zantac 2x a day and Prilosec at night. The worst was last week when my eye actually started to bleed.  That scared me.  I have charted the bad v. good days and think that it may be a bit cyclical.  I would like to know who has the same symptoms as I.  My allergist and internist are both treating two others with masto but I am the lucky one  ..the one with the worst symptoms they have seen.  I did have my bone marrow biopsy and it was negative- I thought this was good- my doc wanted it to be in my bone marrow so we could get it with chemo.  There is not enough info on the internet so I am hoping this forum will help with the questions I can't seem to find answers to.  Luckily, my local doc knows Dr. Schwartz in Virginia and can get me in to see him when I am ready to go.  The distance is a problem but maybe in the near future.

I am in Evansville Indiana which is on the Kentucky border.  I had been to at least 6 or 7 local doctors, several ER visits and then even went to Vanderbuilt without a diagnosis.  All kept telling me I had allergies so I was referred to an allergist at Deaconess Clinic.  His name is Dr. Majed Koleilat.  He has been wonderful and has done everything he can.  I walked in to my initial apppointment and he looked at me and said- you have Masto- within 5 minutes of looking at my face and hands.  He has two other patients in this area but he does not specialize in it.  What was nice is he actually knew what it was and understands it. He sent me for all the testing (biopsy, bone scan- you know the drill) sent my blood work to Virginia and has been great but he is limited in his research and resources. He would like me to see Schwartz and then he would f/u on all recommendations and treat me here per Schwartz's recommendations.

Hi Valerie and welcome to the forum!

I recently posted a reply on this forum to Denise (DM2011), in case you haven't been able to figure out what triggers your symptoms.  There are just some ideas on how to track down environmental and food triggers.  Avoidance of triggers and adequate medication seem to be the two things that help people with all kinds of MC disorders to feel better.  Some people do have their symptoms change with hormonal cycles, and maybe they'll jump in and give you some ideas about that.  

Regarding your eye, an ophthalmologist will be able to tell you whether there's any other underlying condition that could have caused it.  Mast cells can release heparin which thins the blood and inhibits clotting, though.  It's possible that could have contributed to the bleed.  Are you able to eat a varied diet with your stomach problems?  If you're not absorbing vitamins and minerals, especially vitamin K, that can cause some clotting problems, too or if you're taking NSAIDS.  I don't know if or how steroids affect clotting.  It does seem like something to bring to a doctor's attention.

I didn't see in your post whether or not you're taking an H1 antihistamine (e.g., Zyrtec, Allegra, Claritin, Benadryl, Atarax, and others).  If not, that might be something you can do with your doctor that could help quickly.

There are several things people do for pain, although they don't work on all people.  Some take NSAIDS for pain and inflammation.  I used to have horrible pain around my joints, but don't have it since I've been on the right antihistamines.  I also supplement with bromelain and turmeric, which I know have made a difference.  They can interact with other drugs, so I don't recommend starting either of these without consulting a doctor.  If you haven't tried an elimination diet, that might help, too.  Certain foods cause pain for me.

In general, traditional chemotherapy is not done on mast cell patients unless they have aggressive disease or if their symptoms are not controlled to a tolerable level with other medications.  IMHO, not having excessive mast cells in your bone marrow is a very good thing, as not very many people get a complete and lasting response from chemotherapy.  While there isn't a cure for any type of mast cell disorder yet, there is research being done on both MCAS and SM.

I encourage you to see a mast cell specialist as soon as you're able to.  They have the most experience getting patients on the right regimen of meds to alleviate symptoms.  In the meantime, your doctor can contact one of the specialists to see if there's a different medication regimen you can try.  You're very lucky to have a doctor who was able to diagnose you and get your started on meds!  Hope you feel better soon.  Keep us posted about how you're doing!