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CIDP and concerns about treatment risk factors
Neuropathy | Last Active: May 5 6:26am | Replies (22)Comment receiving replies
I am new to the group. I am 68 and was diagnosed with CIDP on March 26, 2025 and will be starting IVIG in about 2 weeks. I have been very nervous about this due to reading about the possible side effects of this procedure. Has anyone had the Gamunex-C infusions and can you share your side effects if any. My CIDP came on suddenly in February of this year and I am currently using a walker to ensure that I can stay vertical. I am grateful to this support group for the information and encouragement that I have gotten from reading your posts as it has prompted questions that I need to ask when I go in for my treatment, but would not have thought to prior to reading this. Any comments or advice is welcome.
Replies to "I am new to the group. I am 68 and was diagnosed with CIDP on March..."
Hi, I have been dealing with CIDP for about 5 years now. I have been in Prednison, Ivig transfusions, etc. The treatment that worked the best was physiotherapy. I cant emphasize enough how exercising the legs and arms made them strong and resistant to weakness. I was also lucky finding a physiotherapist that would strong massage the legs prior to exercise. That was a recipe for success.
But, I'm talking of serios exercising. I did it for a couple of hours DAILY! 24/7 for over a year, then I had 1 day off then 2 days off. keeping it at a five days a week exercising, weights, bands, etc. I got completely out of pain, imbalance, etc. Wish I know about this before!
@itsmeagain
Yes this is the treatment I have been taking for over three years. I have had absolutely no side effects. I’m 82 and get treatment for 2 days once a month.
I did lose a couple of weeks during the bad hurricanes last year (I live in Florida). That caused a weakness due to backsliding but after a week of booster treatment I was back on schedule.
Good luck.
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I was on IgIv for approximately 2 years. The only thing I noticed that it helped was with the electrical shock feelings of pain. For that I am grateful. I then went on Corticosteroid for 12 weeks. I didn't see any improvement. Then I had two rounds of Rituximab chemo. I go back to my team of doctors at the Mayo Clinic the end of May. Hoping that they will advise me as to what I can do next.