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Becky, Volunteer Mentor avatar

CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: 3 days ago | Replies (444)

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Profile picture for ebjj4health @ebjj4health

@becsbuddy I am not back at all to normal lifestyle. I felt fine until 3 weeks after being on prednisone. At that point I started having back pain which has progressed to sternum pain, abdominal swelling and pain, all of which is worse at night with night sweats. I have had lots of testing and nothing else shows up. I did have a positive TB test at the time Clippers was diagnosed but told it was Laten. ID wanted a second test but I had already started steroids and that test was negative. I either ran or walked almost everyday prior to Clippers, it is a struggle to just walk. I don’t sleep well due to the pain and sweats at night.

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Replies to "@becsbuddy I am not back at all to normal lifestyle. I felt fine until 3 weeks..."

@ebjj4health I honestly don’t know what to say about your pain and symptoms. Are you seeing a rheumatologist? Have you had a second opinion? If you haven’t had one, i suggest that you get one. Are you near any comprehensive medical centers or universities with a medical school? Who is helping you while you are sick? I know it’s a lot of questions, but I’m just trying to help you figure out things and make plans

@ebjj4health

Rituximab and/or IVIG infusions have been reported to work in autoimmune neuropathy. Your rheumatologist and neurologist can prescribe these medications.