CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?

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reubenwithcidp | @reubenwithcidp | 1 day ago

Follow up to my above post. IVIG may be having more impact than I thought. I just noticed that my right wrist doesn't hurt when I push up off the couch. This may seem small, but getting up from a couch or chair was difficult and very painful. Before my diagnosis, one doctor was ready to do wrist surgery because the myelin sheath was so shredded. This was of course part of the CIDP effect, but we didn't realize it at the time. I guess myelin can repair itself over time as there is no other explanation. I wonder if others having positive impact stop posting and move on as things improve? Anyway I thought I'd share some good news. Hoping this lasts and continues to improve.

danawyn | @danawyn | 13 hours ago

I was diagnosed in 2014 with CIDP and started infusions every 2 weeks. I maintained that schedule for 10 years, using Lyrica and Cymbalta to manage pain. I had progressed so well I asked my neurologist about switching to SCig. She suggested that I was doing so well perhaps we should just stop the IVig and see what happens. I have been off treatment for 13 months now, still taking Lyrica and Cymbalta but it appears I am in remission. I keep a close eye out for any symptoms of it recurring, but I am hopeful!