I have been seeing a local rheumotologist for almost 3 years. I had a positive ana (1:160 homogeneous). All other blood work is negative. I responded very well to prednisone so he said I have an auto immune disease. I already have ulcerative colitis (which has been in remission for years). We have tried many different medications. I got the most relief from arava. Since it has been so long without a clear diagnosis, I went to Penn Medicine for a second opinion. I saw a nurse practicioner who was very thorough and spent a lot of time with me. She said that I don’t have any other positive blood work and not enough symptoms for an auto immune disease. I did have 14 out the 18 pressure points for fibromylagia. She told me to stop the arava and increased my amitriptyline to 50 mg. It has been over a week. I also did blood work for them and it call came back negative except for a low creatine serum. I am in so much pain since stopping the arava and completely exhausted. I feel like I am a guinea pig and am getting no where. I should be happy that I have a name for some of this suffering. My other symptoms are hair loss (no bald spots, just extreme thinning), swelling of hands and feet (only lasts a few hours and are fine by the morning), mouth sores that come and go, and sensitivity to sun and flourscent lights. I am starting to get really depressed as well. I have put on 20 pounds in 2 years, can’t work out from the pain. I am going to start aqua therapy. Sorry to vent but I know that you all can understand how I feel. My kids are getting tired of hearing mommy doesn’t feel well.
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