Will IVIG work?

I never responded well to IVIg and believe the treatments contributed to my axonal damage. Plasma Exchange while taking Prednisone helped me the most, but I didn’t start on it until several months after getting GBS. I had a favorable response within 3 days of starting PE. So far, I’m still in remission from 2008. If the CIDP were to come back, I would head right to PE! Although I would seek an alternative to Prednisone because of all its side effects.

I also had a poor response to IvIg. I had a five-day loading dose, which seemed to slow the progress, but I continued getting weaker right after. Then I had another loading dose with similar poor results. Soon after that I was in nearly complete paralysis, at which time my treatment was switched to plasma exchange (PE). After nine PE treatments I started to improve, and was also treated with prednizone and CellCept. After five years I am nearly normal and off all treatments.

Patients do not all respond in the same way. Your neurologist must find the treatment which works best for you. I am not recommending treatment, but perhaps you should discuss PE with your neurologist.

I am to begin IVIG on Monday and hope I am not making a mistake. Spinal fluid did not confirm GBS, but pain and numbness in feet and legs plus pain in back and abdomen make it difficult to walk. The only abnormal tests were two EMG’s showing axon damage. I am worried that perhaps I should just accept my situation?

it seems you are on the right treatment track and I wish you the very best results!

According to a recent retrospective study, patients who received IVIg recovered more rapidly than those who received PE. More info about AMAN treatments here:
http://www.medscape.com/viewarticle/730670_9
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152164
http://jnnp.bmj.com/content/76/5/719.long

Other newer treatments include HSCT and Rituxan. Read more here:
http://www.nature.com/bmt/journal/v42/n1/full/bmt200881a.html

Thank you, Jim-LA ! Very helpful and encouraging. Your comments and others in this forum have given me the education I needed to ASK about treatments, but more importantly to keep going until I found a doctor who will at least treat me. I’ll read the articles you suggest.

Thank you again!

Hi Lillie – no, I only had one test. I am diagnosed with an axonal variant based on two EMG tests so they’re going to try IVIG. I have lost sensation from toes to thighs, have weakness, pain in back and in legs plus the usual array of nerve and joint pain. Muscle twitching and jumping also in upper, lower and midsection of body.

I can walk but have foot drop and am too uncoirdinated to run.

I hope to stop progression with IVIG … And maybe recover. How are you doing now?

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

Rick-
Thank you for sharing your story. Others on this chain have much more knowledge than I and I’m certain will weigh in with guidance and encouragement. I have read about many successful outcomes with IVIG and other treatments so I believe you should feel optimistic that you will regain your ‘old self’ with time and vigilance.

I am going for IVIG treatment #3 in a few hours and am getting help quite late in the game: symptoms ramped up over 8 months ago, so I have considerable nerve damage. But, I look forward to the next phase of this disease which will be nutrition and rebuilding muscle mass. It’s good to have goals!!

Thank you again! Renee

Jim-LA – thank you again for the helpful links. I finished the 5-day loading dose of IVIG last week and felt ok during the treatments. However, I would like to hear if others actually felt much worse the following week? I am in pretty bad shape: nerve pain, increased balance issues, sweating, general fatique and increased weakness in legs. Much appreciate any information … Renee.

Thank you, Lillie! Good to know that others experienced the same … I was thinking that IVIG was not going to help at all. I can tolerate just about anything if I’m on the way to improvement. Will rest and drink !