Thanks all that responded to my original request. In another thread I found a few Doctor’s names to research (Dr. Shawn Bird at UPenn, Dr.Mark Brown also at UPenn). Anyone else have any experiences with either of these docs? Are there any other CIDP specialists to recommend in the Philadelphia area?
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.