CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

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.

Yes, I have infusions every 3 wks for 2 days each. I just missed my last infusion due to having intestinal problems and my body, my head hurts.

Yes definitely as that is the only thing I have is infusions of IVIG.
I wish there was a support group for CIDP AND SJOGRENS near me.

I had 8 mos of IVIG infusions and didn’t feel any relief from them,so I stopped them.
No sense continuing them if they weren’t helping me.
In March I will be starting a new infusion recommended by my neurologist called Rituxan.
It’s given in his infusion center 2 infusions 2 weeks apart then again in 6 mos
I hope this works

Hi
It takes a while to work. Do they give you benedryl, tylenol and steroid protocol?

Yes they did.
I actually had IVIG for several months the year before I did the 8 mos of infusions.
They didn’t work either but I figured I’d give it another try a year later.

I've had IVIG every 3 weeks for 10 months now. I think I'm seeing minor gains but at least holding pretty stable and not getting worse. I had a colonoscopy this week and had to stop my Celebrex 5 days before and Lyrica day of the colonoscopy. It was a good test to see if they were helping. Bottom line, they are. I had a lot more muscle and joint pain leading up to the colonoscopy and once back on meds things are better. IVIG takes a while to show progress. I'm anxious to see what my neurologist says and if he wants to switch to something else (I'm on the Gamulglobin now).

I am going to try it again. My Doctor says I need IVIG 2 days a. Month for 6 months at a minimum.