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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: 2 days ago | Replies (308)Comment receiving replies
Welcome @astanko We’re glad you found this site. And you sound like you’re doing OK. Did you have a brain biopsy to confirm the clippers? There seem to be only a few of us who exist with clippers! I’ve been dealing with this for about 4 years.
Since you are on hi dose steroids, have you had a DEXA scan to check the health of your bones. Prednisone can really do a job on bones and eyes. :-(. I’m dealing with osteoporosis now and also just had surgery for cataracts.
What is the doctor’s next plan once your prednisone gets low? I’m now on Mycophenolate as i taper off the prednisone. Sorry, I’m giving you too much info when your so new to all this.
Do you have a good neurologist that you like?
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I didn't have a brain biopsy. My lesions are deep in the pons and both my neurologist and neurosurgeon said that the risk of biopsy ruled it out. They also feel it's not needed to confirm the diagnosis, although we are still working to confirm that it's CLIPPERS and not MS or neurosarcoidosis.
I did get a DEXA scan, it checked just my pelvis and showed osteopenia, which could have predated the brain thing. I'm taking Vit D and Calcium and working more calcium-rich foods into my diet - along with weight training (which I've always done). Thanks for your cautionary words, I am taking them to heart!
Once we get the diagnosis confirmed I'll taper off the Prednisone to something more targeted. If it is indeed CLIPPERS, my neurologist wants to try Rituxan. I've noted your experience with it. I do like my neurologist, Dr. Alexander at Scripps in San Diego. He's fantastic, and the whole team has been great. I'm incredibly lucky to have them working on my behalf. Thanks again for reaching out to me!