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My name is Mark I am a 50 year old man with a recent diagnosis with CIDP. I have had two treatments of IVIG one for three days mid June and one for five days at the end of July. I am currently in a acute rehab in a world renown hospital. I am wheelchair bound and cant stand or walk on my own. So far I have not noticed any return to these abilities. Has anyone experienced lack of response to IVIG or is it to soon to tell, being roughly three weeks since last treatment. I am still remaining positive and working hard in PT and OT therapies.

Mark I am 57 and finally got my diagnosis at the end of May I am getting IVIG 3 times a week 20 ml and walk with crutches or walker. Now almost 3 month later still can’t walk unaided and lost a lot of use of hands. Today I just try to be my own advocate. I go to and do PT. I have drop feet so falling occurs but try to keep a positive attitude. I have be told IVIG is going to be my best friend. Good luck.

Mark, initially I took 5 rounds of IVIG every other week for a few months. Healing is so slow you will barely notice it, at least it was for me. I don’t know why your doctor would have you in a rehabilitation hospital at this time. Your nerves are not connected to your muscles so the muscles are not receiving nourishment, so you have nothing there to rehabilitate until you heal. You just have so many sparks or triggers a day, use them for your every day needs not rehabilitation. You have to get your muscles back before you even have anything there to work on. You must have good insurance.

I hope they have you on a high dose of prednisone. The side effects are difficult but prednisone with monthly IVIG treatments is all that keeps me from getting worse. Just go home and heal. Rehab just makes it worse at the point that you are at.

Many people do react differently to IVIG depending on severity. I do think PT is needed to keep muscles from deteriorating while your nerves are unable to send correct messages. I did find for short term steroids did give quickest response but only if there are no other health issues are not there to prevent using them. Plasmapharesis is also used if doctor feels IVIG is not effective. Two treatments doesn’t seem long enough to determine that. There are other immunomodulating medicines but they take longer to work. Keep asking questions from all health personnel. It helps with making decisions about treatment. Second opinions often help too.

If and how much IVIg makes you improve depends on what stage you were when it was started (how much and the type of damage).
If you have actually lost nerves (profound axonal damage) then you just have to wait for new fixes to arrive.
If you have demylenation then IVIg, considered very safe, can usually repair the damage and/or stop further damage.
Prednisone can also make apparent repair but the result is less permanent and there are potential nasty side effects.
How long? From my experience I would say that the first month is the most improvement but the problem is that it is slow so every day is like a new normal. A good idea is to write a diary over a few months. Be critical about each day so you can look back later and do a compare.

Hi Mark

Unless they ABSOLUTELY positive that you have CIDP get a muscle biopsy to see if it a muscle disorder. I was diagnosed with CIDP got 5 days of IVIG and 4 weeks of rehab (couldn't walk or sign my name). Arms and hands after maybe 2 months came back 100%, legs are about 50-75%. This spring as a follow up I went to the local "expert" on CIDP (didn't know about him during my hospital stay). He did a few tests and said it wasn't CIDP and ordered a muscle biopsey which came back diagnosed as IBM (inclusion body myositis).a degenerative, progressive muscle disorder that has no real cure. But at least I am being treated for a muscle disorder, not a nerve disorder.

I am just like you. I had my 3 initial set on July 8,9,10 and my first booster on July 20th. But I was not in much pain to begin with. But I now have some little aches. Everybody that I have talked to has had a lot of pain and some were misdiagnosed for quite a few years. But I'm not positive either.I do have a demyelinating problem. Some body here suggested that my problem is more motor than pain. All we can do is find out as much as we can in order to ask the most specific questions.

Thanks Bigmike and everyone who responded to my blog. Im about to get out of rehab and go home still cant walk or stand at all waiting to follow up with a neuro and more pt we shall see how it goes.....