CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
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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I was diagnosed with CIDP after my bout with Covid 2 years ago The tingling in my toes and fingers were the first symptom. Then I had the electrical storms in my body. Homemade shock treatment. lol After excessive testing and MRI's and spinal thing, the diagnosis was confirmed. Put me in hospital and got 5 days of IVIG. The electrical stuff went away after a few months, but the "my feet feel like they are asleep and are sticks" feeling" continued. Continued every 4 weeks with the IVIG and then I got colon cancer Stage 3 last February. Continued the IVIG and started chemo. Finished chemo in September. The Neuropathy is worse because of the chemo. My neurologist says to continue the IVIG. I really cannot tell if I am getting better because of the after effects of chemo. I have numbness in my legs. Cannot grip very well. I am mobile, but my husband says I walk kinda like a duck. I am 74. I am weaning off of Lyrica (really no help) . Should I talk to my dr about SCIG treatment?
I went to pain management and all they did was put me on Tramadol.
That was a few years ago, and so now I’m limited to Tramadol 50 mg twice a day.
I choose evening and bedtime along with Ibuprofen 400 mg
I take the last 2 doses of the day at dinner time and bedtime.
Gabapentin did nothing for me as far as pain was concerned.
As for the Tramadol I get a lot of grief trying to fill it at CVS pharmacies.
They act as if I’m a druggie and it’s very annoying
I don’t abuse the Tramadol, I’m in pain everyday with my feet.
Cannot walk without pain.
Mark, Mayo turned me down too. But I’ve had excellent care for my CIDP in Albuquerque at Pres on the West Side. I was first diagnosed in 2021.