IVIG stopped, UGH!

First I recall hearing of this and don’t think my mine has been tested since having a CIDP DX, but apparently it is known

https://www.ncbi.nlm.nih.gov/pubmed/26576014

CONCLUSIONS:
Laboratory test abnormalities were found in most CIDP patients. The most common were paraproteinemia, higher than expected frequency of diabetes, and unexpected CK elevation. Additional abnormalities included anemia, high urate levels, and common biomarkers for vasculitic neuropathies. Muscle Nerve 53: 862-865, 2016.

Even if CIDP causes, or is suspected to have caused, elevated CPK levels I would want to know at least two things.

1. Which form is CPK is high?- CPK is made of three slightly different substances:
CPK-1 (also called CPK-BB) is found mostly in the brain and lungs
CPK-2 (also called CPK-MB) is found mostly in the heart
CPK-3 (also called CPK-MM) is found mostly in skeletal muscle

2. Why is the CPK high? That is, rather than accept it is due to CIDP I would discuss with my doctor testing to rule out all of the more common factors. Specifically, heart attack, statin meds, intense muscle workout, alcohol, viruses, hereditary conditions and certain autoimmune diseases that cause inflammation in the muscle such as polymyositis or dermatomyositis.

Was treated for 3 or 4 months ivig treatment 5 times..It has done nothing!! I have muscle twitching throughout whole body.. I feel weakness in legs feet and slowly hands at times..I can barely stand long without a cane..My legs feel like boulders walking i hibble with a cane doing that 1960 bone test..U know that one vibrations knicks feet knees.. yet my doc says u dont have alot of weakness yet i do have numbness and Im like huh!! I take gapapentin 3 xs a day at 600 mg i been taking it fir 9 months im so used to it, it dont make me sleepy.. This doc is now stopping treatment, and referring to me a pain doctor in neurology in hospital for special surgery in nyc..This doc is also with them..Any help advice grtly appreciated..Sleeping at night for last year been a project! On top of this i have lung isuues breathing issues..Doing some research it seems my nerve damage is irrereversible!! Please help thks and prayers to ever is going through this awful disorder!

I take gapapentin 3 xs a day at 600 mg i been taking it fir 9 months im so used to it, it dont make me sleepy

Best of luck to you. Did the gabapentin help you at all? I cant get to any therapeutic dosing where it doesn’t make me nonfunctional for like 16 hours.

It helps i guess when it wears down like my body when knows next dose other than that no Im walking no better…Im functional with it..I force myself to hobble around.. try to do nordic track bike in morn when i can..This process is very rough i have been walking like this since march of last yr..

My husband just finished IVIG (5 days). First day after treatment, he felt quite a bit better, the next day – through today (5 days after treatment) he has gone backwards significantly. Is this a side effect of IVIG? He is completely wiped out and can hardly walk. He is achy all over and now extremely depressed. Does this pass? Is this normal?

He is achy all over and now extremely depressed. Does this pass? Is this normal?

Can’t speak for others, but my initial loading dose of IVIG had me seeing tremendous improvement after 3-4 days and none of the effects you described.

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.

Thanks so much for your feedback cer1o00 and dsfritz1. Yesterday, was a much better day. Huge improvement over the prior few days. I really appreciate hearing from others, as this is so new to us. Will keep you posted.