Katie, sorry you are having so much trouble. I too am fairly recent diagnosis and I started with an itchy rash on my chest from sun exposure for 20 min! That was in May and I am still getting referred around to find the right treatment. My labs show 3 different autoimmune diseases dermatomyositis, scleraderma, and lupus. I still haven't had a rash on my face. I have a rash on my arms and my left leg. I don't know what you have been told I assume you know "NO SUN" sunscreen is the rule. Do you feel extremely fatigued? Which disease showed up in your lab work screeening that made them diagnose you with AI? I started with my primary care and he referred me to a dermatologist, I also saw a rheumatologist and knew I wouldn't see him again. Attitude is everything! His was indifferent! I asked for a referral to another and still haven't seen him. My derm put me on methotrexate which is a form of chemo that suppresses the overactive immune system we are dealing with. She chose this because I can't take anti malarials and at 61 and having already had hip and arm fractures prednisone was not a good idea. My rash is better on the metho but my skin is still real sensitive- long sleeves make me miserable. Have you had any steroids yet.? Do you have good insurance? Are you in a large city where there is medical school? I will be seeing a derm at Vanderbilt as my derm feels I need more help than she can offer. Now that's a lot of questions but it will help us know details of where you are medically. I know one thing you need to see a different rheumatologist and definately need a dermatologisit. You will be in my prayers. What is your age?

Charbaby,
First of all, thanks for being my friend and for praying for me. I will pray for you also. Prayer is what has gotten me through this experience thus far. To answer your questions: I am 51 years old. My diagnosis was based upon lab work for (ANA, Compliment tests). I have insurance through the hospital where I work (we are self-insured and I have a 2,000 deductible).I am 2 hours away from both the University of Louisville and Vanderbilt University. I had a biopsy of a hive and the surgeon did not order the right tests on my biopsy, so my initial biospy was inconclusive. I have no Rheumatologist or Dermatologist.The Theumatologist denied my case. I am still struggling to find someone who can help me or even cares to help me. My primary physician is young and new to practice. I have an appointment with him next week to dicsuss where to go from here. I am just struggling as to what direction to take. I am a Registered Nurse with a Doctor of Nursing Practice degree. I believe that my healthcare providers think that I am supposed to know what to do. I do not have a clue about this,as my degree focuses on advanced nursing care, research and education.

Katie how about we try email as i have written you an answer 3 times and each time lost it in cyberspace by doing nothing that i KNOW of. I am not a computer guru. I have lots of responses but on email we can share more personal info which will get us together. i am from Ky. Owensboro, Louisville. and Westerrn KY... Charlottern08 @ gmail dot______.I'm posting before this thing goes into spontaneous combustion!

Katie, you okay? Hoping you aren't on as you feel better but kind of concerned that you are down. What I suggest is Vandy unless you have docs where you are that might recommend a derm and a rheu. in Louisville. I can give you names that are at Vandy that I will be using. Still fighting for the waiver from my HMO Medicare advantage plan. Oh I want to change but only advantage plans are affordable on the disability check!

Any side effects of the methotrexate yet?