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Has anyone really gotten over CIDP?
Autoimmune Diseases | Last Active: May 20 11:48am | Replies (49)Comment receiving replies
Unfortunately nothing has helped with my CIDP.
Have been on all the routine meds, and IVIG infusions also for 8 mos with no improvements.
Cannot take steroids due to hypertension history.
Right now I’ve been progressing slowly for past 12 years.
The numbness is now in my right hand,which affects me greatly, and I cannot hold things such as eating utensils,etc.
Trying to do it with my left hand,if possible.
I tried getting into Mayo Clinic in Arizona, but they’re not accepting any new Neuro patients at this time.
Meanwhile my balance issues are terrible, and I cannot feel my feet at all.
My quality of life stinks right now, and there’s a lot I can’t do because of it.
Good luck to you, hope you find some relief.
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Harley have you had Rituxan infusions? It’s the next step in treatment when IVIG isn’t working. I’m in the Phoenix area. If you are too, I have a great neurologist here. I am starting Rituxan for the same reason. IVIG is keeping me barely walking around house with walker. but I am getting worse in spite of it. I do hope you can try the Rituxan. And steroids are possible as long as your BP is treated and stays in control. You might discuss both options with your neurologist. I wish you improvement and totally understand the frustration and quality of life decline.