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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
Autoimmune Diseases | Last Active: 10 hours ago | Replies (323)Comment receiving replies
Did the rituxan end up working? I was diagnosed with GBS in September 2024 after having my first baby. It came on during my third trimester. Now suddenly the doctors think I have CIDP. EMG shows significant axonal damage and legs and arms. I’ve been doing IVIG on and off ever since that but sensory wise have not improved at all. Motor wise, I have improved because I’m able to walk around my house and I was using a wheelchair and a walker for a while, I don’t walk normal tho I waddle around like a drunken penguin. Just so frustrated with this disease because it’s a long time and I have a baby to take care of. I am looking for any concrete answers from doctors, but I never get anything so I find myself, searching for people like you who are experiencing the same things.
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@bestmom14 Welcome to Mayo Clinic Connect! You are certainly having a rough time and with a baby even! But you have been making strides and moving forward! Do you have adequate help at home>
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Sorry for your condition...if CIDP is caused by your autoimmune system, then plasmaphereses will work best ( blood filtration). For your sensory issues I found out Sanexas treatment works the best along with B12 injections in your feet. Problem is -most insurances does not cover this type of treatment. After three month treatment ( twice a week) I'm off Gababentin and almost healed-my sensory feelings are coming back.
If you interested go to Sanexas web site and find out your local provider doing this treatment.
Hope this helps!