The derm appointment went better than expected, but not great. I decided to lower my expectations and like the guy if I at least learn something new at the appointment. His demeanor was interested and kind, and he didn't rush more than I anticipated. I moved fast to be a help, tossing off the gigantic gown so he could appreciate the entirely of the situation right away, which BTW, is now worse than the pictures I posted. I could pass for a zombie in The Walking Dead soon.
He confirmed I definitely have an unmistakable case of Dermatomyositis, likely "sin myositis" since I have no muscle pain or weakness, but that's up to the rheumy to confirm. When I asked about mast cells and cutaneous mastocytosis, he schooled me. Apparently he did his residency in Chicago with a national expert on mast cell diseases. He has seen it, and says the biopsy would have also picked it up. He said my biopsy result of "vacuolar interface dermatitis" is very specific to DM and a few other rare events (drug eruptions, etc), not mast cell issues. He did admit that given my exercise-induced mini-hives, I could have both issues at the same time, but he said mast cells are not the cause of my DM, "it's mostly my genetics" (hmm, not sure I buy that one).
When I asked about systemic nickel allergy, he had no idea, but again said my rash is not one of contact dermatitis. And that requires a visit to a contact dermatitis specialist for testing. Imagine, a separate speciality within dermatology?!?
I still plan to eliminate chocolate, most whole grains, peanuts, most other nuts, most legumes, canned foods, and a few high-nickle vegetables and fruits, trying to maintain a low daily intake. I may pursue additional testing related to metal toxicity, but who knows.
He recommended I start Plaquenil first, then Prednisone, but he knew I was resistant to meds. I explained I was seeing a Chinese medicine doc and an integrative medicine doc and had some differing opinions on approach. I'd read that many people get limited results on Plaquenil and lose their hair in the process, so given my misery, I might head straight for prednisone first. My Chinese doc suggested no more than 20 mg/day. He wanted to prescribe the standard nuclear dose of 60 mgs. He only has 2 other patients with DM, so he's no expert. In fact, he had to leave the room to get answers to my questions!! We agreed to disagree, I promised not to hold him responsible if I don't get good results, and he wrote me the script for 20 mg/day for 30 days. He says he won't let me stay on pred for more than 60 days max, so I will have to taper to methotrexate or plaquenil. I told him I planned to have an alternative approach by then. We'll he who's right.
I give the guy credit for putting up with me. He could have easily fired me as a patient for non-compliance, so I think I'll keep him around a bit. Plus he's around my age and easy on the eyes...
With any luck, me and my crazy diet and practitioners he knows nothing about will teach him something that may help someone else.
One thing I did learn.......
Gloria, are you reading this?............I explained my MC symptoms seemed to miraculously disappear on Claritin, but it didn't help the rash. He was intrigued, but went on to warn me that Claritin is not the safest antihistamine because "it builds up in the cells." "That's why you can only take it once a day." He said Allegra and Zyrtec are much safer, and you can take as many as you need. He has some urticaria patients who take up to 6 Zyrtec a day!!
He said not all people get the drowsiness effect, but since I do, Allegra would be his recommendation.
So I cried on and off for the rest of the day, realizing this diagnosis is really REAL now. Then I called and made an appointment with my rheumatologist to debate the meds again tomorrow and ask for some baseline bloodwork, and some missing DM-related antibody tests. I hope he's as understanding as the derm!
The next line of research? Antibiotic therapy for rheumatic diseases...i.e. the Dr. Brown protocol. The Roadback Foundation. Maybe I'll go from steroids to antibiotics? Who knows. The wacky journey continues...
Visit the Microscopic Colitis Foundation Website
I cried through the entire blood draw and walking down the street. 
