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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)

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@jamie72

I’ve been out the hospital since July 12. Started on 60 mg prednisone for a couple of weeks and then start stepping down 5 mg a week and now down to 45 mg. While this has me back to about 90% everything but my right leg still is still tingling and some numbness I also feel like my motor skills are only about 90%. These symptoms started around the middle of June while I was on 60 mg of prednisone for my lung issues. When I ask my dr about these symptoms on July 1st they told me to stop the prednisone, which lead to the full on attack in July 3 and thus my diagnosis. I say all this cause I’m praying that with the correct medication the remaining symptoms go away or this may be my new normal.
Haven’t driven since end of June. Don’t want to put myself, others or the company I work for at risk. Any feedback on these as I’ve only started this journey, diagnosed July 8, 2024.

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Replies to "I’ve been out the hospital since July 12. Started on 60 mg prednisone for a couple..."

Hello @jamie72 Welcome to Mayo Clinic Connect! We’re glad you found the site. The folks in this discussion group are great and will happily answer all you questions (if we know the answers!).
Can you tell me who diagnosed you with clippers? And, have you had all the diagnostic tests: MRI, and maybe a brain biopsy? I do have to say, that clippers is not an easy disease for most. Some patients with little brain involvement, can get to a very positive point in the disease. As for me, I’m in year 6-7 and still have to work hard and pay attention to what I’m doing. I’m on CellCept and 4 mg prednisone (I’m trying to taper off, but it’s not easy.) I just started Rituxan which really made a difference! And, I get my 2nd dose this week! What do you hope will happen with treatment?