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Living with Polyneuropathy CIDP, GBS, & CMT

Plasma exchange remission

So i have been getting plasma exchange trearments for the past 2 years.(after steroid treatments became ineffective) after my most recent neurological exam.my doctor and i decided to stop treatments for now.becase the cidp has stopped progressing. I still have neuropathy in my feet,slight hand numbness, and some fatique,but i can function a lot better tha i have in a long time.just wondering if anyone else out there is in remission

I had remission 2 or three times while on and off cyclosporine. Had to stop cyclosporine because of cancer risk.

Good luck

Bryan, I have had the exact experience you have had. Diagnosed March 2, 2017, started plasmapheresis right away, had two relapses (April and June), then had plasma exchange until Sept 18. On Sept 18 I got a blood infection from my catheter and besides alomost dying (fortunately I was in the hospital having my plasma treatment when it happened) they had to remove my infected catheter and we decided to see how I respond. So far so good. I have numbness in my lower legs (to the knees mainly) and my feet deal with neuropathy, some nights feel like they are on fire. I also have slight numbness in my arms. But I am able to function realatively normal. I have a terrible time sleeping because that is when my nerves fire up the most and just feel like a raw nerve at times and I have to get up and sit. I take Gabapentin (600 mg twice a day) that helps me reduce this sensation.
I also take Cellcept to help control my immune system.
I hope we stay this way and continue to improve. I would like to try to jog soon as I used to be a marathoner.
Happy New Year! I hope it is a great one!
Andrew

Bryan,
I forgot to mention that I also have fatigue. I unloaded the car after a recent trip 20-40 lbs of suitcases and stuff and couldn’t hardly life a 10 lb box, I had to drag it. I had zero in the tank.

I’m hoping to be able to stop IVIG. I’m stable and functioning at @90% with numb feet/ankles like you and nighttime nerve pain. I’ve spread out my treatments (2 days at 35 ml per day) to every 6 weeks. I tried to skip one back in October but had symptoms so took prednisone and then IVIG resumed. My doctor says yes people can and do go into remission. Wishing you the best and keep us posted. May 2018 be the year researchers find solutions to autoimmune diseases and may all those suffering be free of pain.

Jeanne, or others,
Does the IVIG help with the numbness? Does the numbness dissipate after a treatment? I recieved Plasma exchange and haven’t had one since 9/18/17 and don’t desire another if I don’t have to. But if treatments helped the numbness subside I would consider IVIG or plasma

Yes for me the fatique is the worst part.i told my wife that i get tired of being tired after working for forty years its hard to not be able to do the things i used to but,i do what i can cooking cleaning,and yard work,and such,but i take lots of breaks.im lucky to have a very supportive wife and family

I still have slight numbness in my hands.my feet are still bad but seem to be getting better.my feet are where this all started and take the longest to heal ,but probably will never heal all the way.ivig didnt work for me,but the plasma did after 2 years .i havent had a plasma exchange treatment since october they ate not pleasant but seemed to work for me

Apyper65 - My feet numbness is my constant. I don’t think it will go away. But squeezing (like a vice) and pain, along with numbness in my face and burning in my hands come and go. I’m happy when my only sensation is the dead zone that is my feet. If you haven’t had a treatment since September and are feeling ok, then don’t mess with what’s good. If your symptoms are progressing, and/or you are having difficulty walking or doing daily activities, then talk to your doctor about trying IVIG. But if you’re stable, YAY!!! Best to you. Hope you continue to do well with no medical intervention. Just eat well, keep stress at bay as best you can, and enjoy life to its fullest, even with symptoms.

Thanks Jeanne, Best to you as well

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