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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: 2 days ago | Replies (308)

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@becsbuddy

@kristyinoregon I am so upset for you in losing your neurologist. We put our faith and trust in someone only to have it yanked away. But, it sounds like her co-workers are more than willing to take you and Clippers on. And it’s good to hear that they will send you to a multidisciplinary group. I think you are in the right hands!
And don’t think about the CellCept and prednisone. I was on the same combination at the beginning and it didn’t work for me either. All the doctors are on a trial and error plan because so little is is known about clippers. What is 1 thing you would like to have come out of this mess?

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Replies to "@kristyinoregon I am so upset for you in losing your neurologist. We put our faith and..."

Hello Becky,
Thanks for your response to my post. You mentioned the prednisone and Cellcept didn’t help you at first. I have noticed that many of those who had a positive response have also had an prednisone infusion. Did you ever have that? I understand it’s a really high dose, and while I would not look forward to starting over on a prednisone taper, it might be worth it. Thoughts?
I really just want to find treatment that improves the lesions in my PONS, and hopefully, my symptoms…..CLIPPERS or not.
How are you doing these days?