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Tumid Lupus with SLE Symptoms?

Autoimmune Diseases | Last Active: Feb 26 3:30pm | Replies (101)

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@johnbishop

Hello @efreeman, welcome to Connect. Thank you for sharing. I have polymyalgia rheumatica (PMR) which is currently in remission and also have osteoarthritis and small fiber PN. I have had different Sed rate (erythrocyte sedimentation rate) labs and my doctor took the time to explain what the test numbers mean. Mayo Clinic website has some good information on the test here:

Sed rate (erythrocyte sedimentation rate)
-- https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797

There are some conditions listed under the Accuracy of test results section that list some of the complicating factors for test results.

Have you found anything that helps you? Has your doctor recommended any treatments?

John

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Replies to "Hello @efreeman, welcome to Connect. Thank you for sharing. I have polymyalgia rheumatica (PMR) which is..."

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.