Reply To: Will IVIG work?

August 30, 2016 at 1:11 pm

Good morning.. I was diagnosed with CIDP in the second week of June of this year. I went through the four day IVIG treatment two weeks ago. The disease had progressed into my arms and hands on Sunday prior to the treatment and I felt like my arms had been scalded. I considered having my wife take me to emergency but I decided to tough it out until I could get into the infusion center. I loaded myself up with Gabapentin and some Motrin and started the treatment on Monday morning April 15th. After the first treatment I felt the disease retreating and by the end of the fourth day, I could feel my toes again. Along with the IVIG treatment, I started experiencing a mild headache, nausea and fatigue which continued well after the treatment had concluded. I was basically down for three days after the treatment. By the fourth day post IVIG, I had a very sore neck and a bad headache that Tylenol wouldn’t alleviate. I contacted my neurologist who gave me a short term steroid and switched me to Motrin, which made me feel normal again other than some dizziness for a couple of days. It was pretty great to be back to that condition. Today I’m at my 12th day after IVIG and I feel this disease advancing on me again. I still walk everyday but am very tired by the end of the day. I’m meeting with my neurologist in two days to discuss my treatment plan so I’m not giving up hope even though I’m very discouraged. This could be a vicious cycle if I’m doing this every couple of weeks. I also worry about the side effects of long term IVIG. I ended up with this stuff after colon surgery in November in which recovery from that procedure was very difficult. I noticed the numbness shortly afterwards and the following numbness and pain progressed so fast I could not get my head around it. I have some weakness but can still walk somewhat normally and do some of the things I did before however fatigue and pain are a huge issue. I do feel a weakness in my ankles and wrists that is coming back on me. I suspect it will get worse. Sleep is difficult since I fear what I will discover when I wake up. I am 65 and retired but am raising one of our grandchildren. Helping my wife in this mission and being part of our family is an enormous concern. My neurologist seems to think I should be able to lead a normal life but I certainly am unsure of that prognosis at this point. I just wish I could see some light at the end of the tunnel. I’m sorry I cannot offer some encouragement to my fellow patients afflicted with this terrible disease but that is my story.. Good to know I’m not alone and that alone brings me some comfort. Rick