Yes you an move to tumid lupus discussion. I have and appointment coming up with my primary care provider and will bring it up with her.
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Autoimmune diseases, Bone, joint, and muscle disorders, Immune disorders
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I have had tumid lupus for about 12 years. I have lived with the small red skin spots after not being able to find a treatment for the condition. My problem is that in the last two weeks my small red spots have turned into raised large red spots. They is more itch with these raised spots. Has anyone experienced this condition? I also have polymyalgia rheumatica for which I take 5 mg/day prednisone. Have tried to decrease to 4 mg/day but muscle aches return.
I originally went to Mayo back in 2013. I got a confirmation on my tumid lupus diagnosis. Since then I have been diagnosed with fibromyalgia rheumatica. I am interested in finding out if there are any new advances in the treatment of these two conditions. I am currently taking 5 mg/day predisone(down from 20 mg/day,decreased 5 mg/month) for the fibromyalgia rheumatica, with alendronate sodium once/week to fight osteoporosis. I also taking 17.5 mg/week methotrexate to help with the tumid lupus, I think. I would appreciate and help I can get regarding these conditions.
I was diagnosed a little over a year ago with polymyalgia rheumatica. I started out at 20 mg prednisone a day. Have been on a regimen of decreasing 1 mg a month. 3 months ago they added methotrexate. As I get down to 7 mg a day I start to get muscle aches and pain back. They have pushed me back up to 10 mg a day and started back down 1 mg a day. I am now back down to 7 and have some mild pain some days. I also have tumid lupus that I have been treating for the past 10 years seeing 5 different dermatologists ending up at Mayo with them confirming that it truly is tumid lupus. Dr.s not sure if the two are related. I am on methotrexate as a way of weaning me off the prednisone.
I started having all over body pain about a year ago. Started with rheumatologist local clinic, then a hematologist local clinic, then a neurologist local clinic, then a neurologist Madison WI. Each giving me relevant tests. Ended in Madison with deep muscle biopsy. They ruled out everything they thought it might be. During the investigation I was requested to have an MRI. I am allergic to the die so they had me take 30 mg of predisone at 3 AM in the morning. When I woke up at 7 AM I had no pain and my tumid lupus spots were mostly gone. Later that afternoon I had an additional 30 mg of predisone prior to the MRI. The muscle pain and tumid lupus spots were gone for about a week. After my rheumatologist and hematologist conferred they decided I had PMR. They started me on 20 mg/day predisone and decreasing the dosage by 1 mg/day/month. I did this until I was down to 7 mg/day and the muscle pain came back. The rheumatologist recommended I go back to 10 mg/day and add 12.5 mg methotrexate per week. I then started decreasing the predisone 1 mg/day/month. I am back down to 7 mg/day and will drop down to 6 mg/day in December. My tumid lupus spots have returned and do not seem to be affected by any of the current medication. So far the PMR seems to be under control. I have a little stiffness in the morning but seems to wane as the day goes on.
I have had tumid lupus for 10 years. I have been evaluated by a local dermatologist, another from St. Elizabeth's hospital, UW hospital Madison, WI, and Mayo Clinic Rochester MN. All took biopsies and confirmed diagnosis. Took requested meds for first couple of years with nothing working. In last year I have been diagnosed with polymyalgia rheumatica. preparing for a mri I was given prednisone for allergic reaction the the die used. The prednisone relieved the muscle pain of polymyalgia rheumatica and initially removed the tumid lupus spots when I was taking 30 mg or 20 mg/day. I have been decreasing the prednisone 1 mg/day each month. When I reached 7 mg/day my muscle aches from the polymyalgia rheumatica came back. I was then told to add 12.5 mg methotrexate per week and went back up to 10 mg prednisone per day. I have since decreased by 1 mg/day and am back down to 7 mg/day with the methotrexate weekly and the muscle aches seem to be in control. Will continue the 1mg/month decrease of the prednisone to see if I can get off completely. I have blood draws monthly to check my sed rate markers and they have remained in the acceptable range for the last 3 months. Hope this helps you with your troubles.