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Living with Polyneuropathy CIDP, GBS, & CMT

Just had first IVIG for CIDP

Hi everyone. I recently started to get IVIG (one treatment down). It took about 4 years of fighting with the insurance company and for the test results to prove what my doctor knew then. I know that it takes at least 3 to 6 treatments before I will start to hopefully notice a difference. I am trying to take it one day at a time but the craziness of one moment “ok” and the next feeling like I am going to drop is just becoming to much. I have been getting lidocaine infusions now for about 3 years that provide some relief. I get about a week where life is functional. I have tried all the other pain meds and the side effects are worse than just trying to deal with the pain. I was wondering when people really felt “better” from the IVIG and what better really will mean? Also, was wondering if people have been able to tie the onset of symptoms with an event or something in there life?

Hello aanda,
As you probably know, everyone with CIDP is different. In my case I mentioned some of my symptoms to my doctor when I had my “welcome to Medicare” visit. This means that I am 65 years old. He made no diagnosis on my complaints and sent me to a neurologist. He did numerous tests and asked many questions, giving me possibilities of what could cause each of m symptoms. I later made an appointment to go back for an EMG test. I also had many blood tests done at my primary doctor and neurologist to rule out many of the possible causes of my symptoms. All my blood work came back normal. My EMG showed axial damage [slow response time to electric stimuli of nerves and missing/low F-waves]. My other symptoms were burning feet/ hot feeling when cold metal put on top of feet/ankle, reduced sensation of feet when doing the vibration testing, swaying when standing, wobbling when walking slowly, and not moving my left arm when walking. Doctor observed that I swung my right arm but not my left arm]. I also have trouble hitting the right keys with my left hand when typing even though i am looking at my hands when I type. My movement symptoms just seemed to get worse over the last year. I never thought to think that it was not just me getting old. I had trouble with insurance but once i got it all sorted out i started IVIG in late November. I noticed a difference only a few days after my first treatment. I get 80G of Gamunex every 3 weeks and have had 3 treatments so far. I go back to my neurologist in April. I do not sway when i walk, can stand still without swaying, notice that i swing my left arm almost as much as my right when i walk and my left arm “listens” better when I type. My feet still do not feel “normal” and i have major fatigue [could be mostly IVIG but i had moderate fatigue before IVIG]. So for me CIDP came on very gradual and is responding well to IVIG. I don’t have severe pain, get around much better and can get by with some ibuprofen now and then. I hope you get a good response as well.

Hi aanda4390,
I have been on IVIG for my CIDP for about 5 years. I get 45 grams of Gamunex every other week. My EMG tests are very similar to dsfritz results. I have never had any adverse reaction to the IVIG, and assume the Benadryl and 100 mm of corticosteroid (steroid) that is first administered beforehand prevents my having a reaction. Although the IVIG hasn’t improved my symptoms (also similar to dsfritz’s symtoms), the disease has not progressed over the six year period. It may be my mind playing tricks, but I feel less neuropathy in my hand and feet later in the afternoon after receiving IVIG. I also feel more neuropathy about 12 days after the infusion. I am convinced the IVIG works for me. I also go to physical and occupational therapy often, and find this is very important for my ankle and hand strength. My balance has also improved through exercise. Having a positive attitude and being proactive, will help improve your quality of life. I do get occasional “zingers” shots of nerve pain in my feet and ankles. Exercise has also helped reduce the zingers. Wishing you all the best in your treatment. Think positive and work hard at saving the small muscles in you hands, feet and ankles.