Reply To: Two flair-ups since October

February 6, 2023 at 11:51 pm


Thanks for sharing. I hope this gets better for you.  I wish this forum was more active.  I check it almost every day.  I have no experience with IVIG, been just using Cellcept.

I was doing great through last Summer when I dared to reduce my dosage.  Doc and I agreed on reducing my daily 2000 mg to 1500.  I went to 1000 on my own and about 3 months in I realized 1000 wasn’t enough.  Back at 1500 now and doing better but considering going back to 2000 mg.  I’ll be monitoring and seeing how it goes.

I was going to get the shingles shot also but when I found out it was a live vaccine, I didn’t get it.  I do need a pneumonia shot and will consult my neurologist.  For work,  I was supposed to get a Yellow Fever shot last year, but luckily they accepted a waiver.  That’s another live vaccine.

Feel free to post here, I’m always checking to share conversations, experiences, and knowledge.