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Living with Polyneuropathy CIDP, GBS, & CMT

I'm new here - have CIDP

Hi, I am 64 yo female and have had CIDP for about 17 years. I do get Ivig treatments every 3 weeks. I am married and have a 21 year old daughter. My condition is under control, but I suffer with peripheral neuropathy that is very painful. It has not been easy to get the pain under control. I’m glad to find this place and look forward to meeting others. :slight_smile:

Katz. I have had CIDP for 7 years, probably much longer, but that’s when it was diagnosed. I’ve had IViG for all the years twice a month until 6 months ago.My white count got very low as did my platelets and neutrophils. They stopped the IViG and my Bloodwork improved. But I’m scared to start it again. I had chemo (cyclophosphamide - Cytoxan) and that did not help at all but it messed up my bone marrow so now they think I have MDS and/or Lymphoma. I’m lucky - no pain, but that’s bc I have no feeling and absolutely no balance. Must use cane or Walker. I’m getting worse but I can’t take any of the normally prescribed therapies. Rituxan is a likely next step. I don’t know how you raised a child while dealing with CIDP… I am 74 years old and I worry that soon I will be unable to drive. That wb a total bummer. Anyway, just sharing. Welcome to the forum, and good luck with your progress.
Mike

Hi Katz, I’m 59 years old was diagnosed 5yrs ago and was receiving IVIG every 3 weeks until 3 months ago. After my neurologist conducted an EMG test and determined that my CIDP was progressing and the IVIG wasn’t working. I too suffered a great deal of pain. I’m currently taking Cymbalta. Topomax, and Lyrica. I still have a great deal of numbnes, but the pain is bearable.

Hi all I am 58 and have had cidp for about 6 years I’V steroids worked for me for awhile but started to be ineffective.ivig didn’t work for me.i now do plasmapheresis every 4 weeks along with a small amount of steroids(down from every week after a relapse)it has worked for me so far and is cheaper.

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Hi Mike, thank you for the response. I do not have feeling in my feet and hands, but still suffer with pain. I too have trouble with balance. Maybe your doc can do the IVIG every month or change to a different brand of IVIG. Pray you can find the right treatment. Katz

Hi Bobby, I tried Cymbalta, but I started having uncontrollable sweating. It did work, but could not keep taking it. I take hydrocodone and Effexor in small doses. It does not work that good, but do get some relief.

Welcome Katz! We’re glad you have joined us :slight_smile:

I have had CiIDP for 15 years. IVIG seemed to work but had to stop after one treatment because of rash. Steroids and plasma exchange did not help. Had chemotherapy with cytoxin. No help. Did get improvement from cyclosporine but the immune suptesent eventually got me Merkel Cell skin cancer.

Radiation treatment after successful surgery exacerbated the CIDP and has left me unable to dress myself,etc.

Quite desperate. Have a call in to neurologist to check out SCLG.

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