Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

Weight loss/long-term CIDP


#1

Hi there,

I am new to this forum and everyone on here appears to be so helpful and generous with their assistance.

I was diagnosed with CIDP and have had either IVIG or plasmapheresis treatments approximately every two weeks since 2002. These treatments have allowed the disease to plateau and allowed me to proceed with my life. While I have extreme weakness in my upper legs I have been okay.

Suddenly in the last month, I have experienced rapid weight loss and nothing in my life has changed. Diet, gym, meds are all the same as usual.

Has anyone else with long-term CIDP experienced rapid weight loss?

Thank you in advance for you time and assistance.

Brad


#2

Hi Brad, I did a quick google search and it turned up this article: https://globalgenes.org/raredaily/mysterious-weight-loss-leads-to-diagnosis-of-cidp-chronic-inflammatory-demyelinating-polyneuropathy/

It seems you are definitely not alone, but maybe we can draw more attention to this topic. I hope you are still able to stay active even with the weight loss,

CG


#3

Hi Brad,
I to am new to this forum. I had GBS in 2012 and was diagnosed with CIDP in 2014.
I have had the opposite! I have gained weight. I am on Lyrica and weight gain is a side affect.
Unfortunately here in Australia we dont have the education on GBS/CIDP.
I’m excited to have people to talk to who also are living daily with this.
Regards
Kalli


#4

Hi, there,

Thank you for your email and kind words. I am doing okay and still go the gym almost every day. I had a physical and everything appears a-okay with the exception of the weight loss. I called my neurologist and he said that CIDP would not be the cause. So, there ya go!

All the best,

Brad


#5

Hi, there,

Thank you for your email. I hope that you find a good neurologist to help you out with your condition.

Good luck!

Brad


#6

That is good to hear Brad!

CG


#7

Well since I’ve had CIDP I went from 175 lbs. to 132, and I can’t seem to gain any of it back. If your neuro doesn’t get it ask him (nicely) to check out this site.


#8

Hi my name is sweet potatoes I was diagnosed with cidp in 2014 I started losing weight just this year rapidly without changing anything also about 12lbs I take ivig every 3 weeks so you are not along


#9

Rapid weight loss could be a symptom of something serious. I’m glad you’ve asked your doc.

I went from my usual 180~185 to 125 and full paralysis for months before getting diagnosed with cidp.
Now, after close to 5 years on cellcept and prednisone, I can’t get below 192. Ug.


#10

Hi Kalli. I have also put on a lot of weight I’m on Lyrica Endep and Prednisone all 3 of these causes weight gain so I stopped taking them all worst mistake of my life the pain was excruciating I’m unable to exercise and am in a wheelchair a lot of the time. Wishing you well