I saw my neurologist yesterday. As my story goes, I got weak after 2 months of every 2 week frequency of IVIG (25 gms); now I am on every 10 days frequency (1 month now). My reflexes are still present (arms, knees,) and he felt I was pretty strong; except for my thighs (doctor said “hip flexors”). This “weakness” involves other symptoms too. I have difficulty walking uphill, I get fatigued after walking the dog for 1 hour, groceries are somewhat difficult to lift, hard for me to get back up after stooping down, my legs ached when I walked. Although the doctor thought I was pretty strong; I think strength is subjective. I don’t think I was “strong” because of the activities I mentioned. Therefore, I am back at every 10 days. I don’t have any severe kind of neuropathic pain; although I get painful electrical shocks several times a days. I don’t know when my doctor will try to decrease my IVIG frequency again–it doesn’t seem to work after 2 trials. My life revolves around the IVIG treatments and this terrible CIDP. I am still in the working force. How does every one cope with this? Has any doctor told you anything about remission from CIDP?

To MarkEns–Thanks for your input on IVIG. I think if I continue every 10 days of IVIG, I will feel much better. The IVIG seem to work for me at this frequency. I am apprehensive about chemo drugs, don’t like steroid side effects, and I think Plasma Pheresis is too invasive. I guess there’s nothing else left. I don’t understand why my body needs IVIG q10days. I thought that half-life of IVIG was 42 days. Correct me if I’m wrong. Someone in the forum mentioned that IVIG does not induce remission. I am clueless as to how long I will be on this IVIG–I know it’s very expensive. I read somewhere that IVIG is a FDA approved treatment for CIDP, so hopefully medical insurance will always cover it. My doctor has never suggested any other treatment besides IVIG.

Does anyone know of a good neurologist for CIDP in Southern California; specifically, Orange County, California. I go to MDA center in Orange, CA, but I am not impressed with them. I have another neurologist who consults w/ the MDA MD in Orange.
I am only getting IVIG; now every 10 days as compared w/ every 2 weeks. I was on q2 weeks for 2 months only and I became weaker.”Weak” in the sense that I did not feel as “normal” as I did with the IVIG q10 days. I did not like to be on the “edge of weakness”. In your opinion, Does this constitute a valid reason for changing my IVIG back to q10 days? My doctor has tried the q2 week IVIG regimen twice in the last 8 months and I failed twice after 2 months.
Am i going to be on IVIG for the rest of my life? I get 25 gms now q10 days.
I feel like a guinea pig–the doctor was trying to lengthen the days of IVIG; if that worked, then he would decrease the dose. But apparently, this has not worked. Now I have to work myself back up to “normal” again. In the meantime, my muscles (leg) are starting to ache.