Reply To: Recently diagnosed cidp
I was diagnosed with CIDP at the end of September and did not start IVIG until this November due to insurance coverage/issues. I originally was being set up for home infusion but changed to infusion center because of Medicare. I am on original Medicare and the IVIG must be done in hospital or infusion center in order to be covered under part B. Home infusion is covered under part D [prescription plans] which would have been very expensive for me. I am fortunate in that I signed up for Medicare in August so I could get a suplimental plan F without issue [open enrolement within 6 month of medicare start].
My CIDP is slow progressing and I just kept thinking I was getting old but finally said something to my doctor during my yearly checkup. He sent me to a nurologist who did all sorts of tests and ended up diagnosing CIDP. I get 40G of Gamunex given over 2 days every 3 weeks. A few days after my first treatment I noticed my feet didn’t feel the same; not normal but they felt different. Also one of the observations my doctor made was that i never moved/swung my left arm when i walked; only my right arm. I noticed I was swinging my left arm when i walked, not the full stride i did with right but i did swing it. I even purposely held it at my side then walked and just let my arm do whatever it wanted to and it swung. I also noticed i did not plop my feet like i had normally done. When i walked very slowly i always moved side to side [my wife would always tell me i looked like i was going to fall over]; After first treatment I was steady on my feet when i slowly walked. I still have some issues with hands and feet but can say with 100% certainty that the IVIG treatment is working for me. I did notice that on the third week after my first [prior to my 2nd treatment] that i was starting to plop my feet again but not as bad as before. My nurologist wrote the prescription in a way leaving it up to me whether or not to go every 2 or every 3 weeks. I may change to two weeks if there continues to be the decline prior to next treatment. The nurologists nurse informed me that with the every 3 week choice I may see a little digressing but it should be less and less as treatment continues. I go back to doctor at the end of April.
I hope you have great success with your treatment Buzz.