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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)Comment receiving replies
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?
Replies to "Hello Becky, Thanks for your response to my post. You mentioned the prednisone and Cellcept didn’t..."
Hi Kristy - just chiming in with a quick note here. I received Pred megadoses via IV while I was originally hospitalized. It was several doses of 1000 mgs. and it totally worked. It took 7 months to get off the Pred after that. Now, two years later, I'm just doing the Ruxience infusions every 6 months and symptom free. I'm 57 now. The pred was a real whallop but totally worth it for me. I train every day (weights & cardio) so I can be ready if I ever need to go back on pred.
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@kristyinoregon You ask a good question about prednisone and cell cept. I think that the first time it didn’t help was because it was probably too early. I don’t know if all the lesions were gone or not. At that time the primary doctor was out on maternity leave (but she’s back now!). So, the primary doc came back and she is fabulous! She has her way of doing things. I was given 8 months of chemotherapy and then restarted on Cell Cept and I’ve been OK since. Now, I’ve added rituxan. I really, really hope it works this time. Your doctors will keep trying and you get to be patient. It can take awhile to get into remission. It all depends on how many lesions you have. Nothing with Clippers acts quickly, unfortunately.