Hi. Ame in San Diego here. I pop in now and then. I really should post more. Happy to report that I’m doing great. Had a 12 mm lesion in my brain in March of 2022 along with the “peppering” of smaller lesions in the brainstem but now my MRIs are clear. Feels like a miracle and I live every day as if it is. Right now I’m trying to regain my fitness after the 8 months on Prednisone. Down to the last 10 lbs! Anyone dealing with CLIPPERS or recovering from Prednisone treatment, feel free to contact me.

@luvenlife1 @littlecactus @benjaminuk I’m responding to all of you together. I’ve been on a health leave for the past 2 months so haven’t seen your posts. Sorry! I’m also the one who started this discussion. My journey with CLIPPERS started in 2017 but wasn’t diagnosed until 2018. Maybe it’s my age (76) but I haven’t had an easy time of it. But, I’m so lucky that I have excellent doctors! Do your best to educate yourselves on CLIPPERS so you can work with your doctors and not just follow directions. Be your own advocate! Here are some articles to help you get started:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927899/
https://pubmed.ncbi.nlm.nih.gov/28386850/
I’ve been on mycophenylate (cell cept) for about 4-5 years but then I developed a severe reaction so was switched to Myfortic. I was also trying to come off of prednisone when new lesions showed up . Darn!
This is why you want to educate yourself. You want to be aware of any changes no matter how small. The doctor won’t know about these unless YOU tell them.

Finding a good doctor is important! I go to a university medical center where I see a neuroimmunologist. She bounces questions off doctors at Mayo Clinic.
You can also contact one of these organizations which can recommend appropriate doctors:
https://rarediseases.info.nih.gov/
https://rarediseases.org/
I’ll do my best to answer your questions!
Becky