Ron,

I have United Healthcare through AARP. I had just started the approval process when I found out that home infusion would be covered by part D. I had a special signup period for Medicare since I did not have employee covered insurance at that time and was paying very high premium for my individual policy. When i switched to Medicare my insurance screwed up and claimed i was still covered by them [that is what Medicare told me]. it took a lot of phone calls and a month or so to get that straightened out. During that time is when I researched home vs hospital outpatient or infusion center coverage. After the research i told the contact person for my Part D that i was going to have my neurologist change my orders to an infusion center, that I was no longer interested in home infusion, so the approval process for that was not totally completed.
Besides a bunch of tests during initial and followup examinations my neurologist tested two nerves in one foot/leg for my nephropathy.I forget what test he called it but it involved a lot of shocks! I had slow response in both and one had infrequent F-wave readings [only registered an F-wave one in 5 times]. Although i had some issues with my hands as well he felt no further testing was needed in other foot/leg or hands. Then, after ALL the blood work he ordered came back normal he then diagnosed me with CIDP…started treatment…and here i am today….doing great.

Hello fellow,
I am 66 now and have suffered from digestive issue since childhood. My digestive issues have gotten much better over the years once I studied what bothered and what helped my system. For me I need lots of fiber in my diet and never overeat, eat smaller meals and snack inbetween, eat yogurt, never drink milk [used to be lactose intolerent but may not be now but haven’t drank any milk in more than 20 years]. I was not diagnosised with CIDP until last year and get Gamunex two days every 3 weeks. I will soon be trying to go 4 weeks between treatments. The only side effect I really got was extreme fatigue for 3 to 4 days after 2nd day treatment. A few months ago i reduced my dosage by 25% and have maintained my initial symptom improvements. Since the reduction in dosage I am not as fatigued and can survive going to work after the infusions. I could not go to work on the previous dosage. My diagnosis is complicated by the fact that my nurolosist won’t rule out having also early Parkenson’s.

BryanF, I’m with you on the fatigue. I drink lots of coffee in the morning to get going but it just doesn’t do it for me. I am especially fatigued 3 to 4 days after my second day of infusion. unlike you, if I go to bed early i wake up too early and can’t go back to sleep, I get up at 5:30 AM and usually fall asleep around 9:30PM but I am still fatigued almost constantly. My bloodwork is all normal and indicates no vitamin/iron deficiency. I’m trying to learn to live with the fatigue but I find it more and more difficult with still working a full time job. Thank God for my wife who takes care of all the housework and doesn’t nag me to do things when I need to just rest alot on the weekends.

Like Cerr100 I too saw great improvement just a few days after my initial treatment but did/do suffer from more fatigue [which I constantly have] for up to a week after each treatment. I don’t get any aches or pains or other side effects.

Pik,

I don’t have the same CIDP as you but I have sensory type and no weakness so far. I do get burning in feet and reduced feelings in hands/feet. I had trouble with balance and ploped my feet when I walked. I started IVIG in November and after the first 2-day treatment my balance got better and I stopped ploping my feet. I get infusion every three weeks of 80G Gamunex. I am 65 so I have Medicare (original) and a supplimental plan which pays for my treatments. I had to have doctor switch from original prescription for home infusion becasue that would fall under Medicare D Prescription plan which would have been very expensive for me. I still have burning in feet and when someting cold is placed on foot it still feels warm. My left hand usage has improved but is still reduced. I see my nurologist in April to review my progress and treatment plan. I have moderate fatique which is worse for a week after each infusion. I drink lots of /coffee/caffeine each morning but it doesn’t help the fatigue. I am able to still work but it is challenging at times. I hope and pray IVIG will help you as it has for me. Let us know how it goes.

Buzz,
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.