CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?

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Becky, Volunteer Mentor | @becsbuddy | Jun 15 10:28pm

In reply to @orbit "@pacer3702 Correlation is not causation!" + (show)

@orbit Welcome to Mayo Clinic Connect! Glad you’re here! MCC is a place where people can ask questions, give answers and give lots of moral support to others when they need it. But we don’t diagnose or treat anyone or even suggest they try a medication.
Do you have an autoimmune condition that you would like members here to help you with?

gbspgh309 | @gbspgh309 | Sep 17 11:11am

In reply to @sherlock "They help with energy and pain. I always know when it's time for my next infusions..." + (show)

@sherlock I have IVIG for hypogammaglobulinemia. I also suffer with PMR and GBS. The pain in my outer left foot will waken me sporatically. I have found Frankincense and Myrrh creme (available on Amazon) helps to numb the pain.

beth341 | @beth341 | Sep 18 8:06am

I use those also. Aches and pains from Vitality works great.

busylady10 | @busylady10 | Sep 18 8:20am

In reply to @sherlock "I had 3 years of monthly treatments and didn't see improvement until after a year. I'm..." + (show)

@sherlock
In all my reading you are first to mention what to watch with diet! Not even dr had suggestions it can get overwhelming at times. Thank you

foundryrat743 | @foundryrat743 | Sep 19 8:16am

That is an excellent question!! Yes, I have CV ID, a rare immune deficiency disease, diagnosed by The Mayo Clinic. Also I have been diagnosed with chronic, inflammatory polyneuropathy, after testing, this last year, by my neurologist. I have been on I-V therapy for 6 months now, for CVID, and my immunologist says the gamma gobulin plasma treatment, by I-V is also used for CIDP. I am in the process of being tested and evaluated for being diagnosed with CIDP. I have had most of the symptoms. So, the infusions have gone well, until the one I had this week, where I have more energy, and a lessening of symptoms, of both CVID, and polyneuropathy. This week, however, after the infusion, I felt cold, and was shaking a bit. Seemingly I couldn’t get warm, so I went to lie down, fell asleep, and when I woke up a few hours later, I was fine. I didn’t feel cold, didn’t shake, etc. However, I did develop a mild headache after getting up. I took an Excedrin Migraine and that took care of that. So, that’s my experience with I-V infusions. Wishing you good luck.

beth341 | @beth341 | Sep 20 2:15pm

In reply to @hjw473 "Hello all, I have a diagnosis of CIDP, I did IVIG infusions for awhile. I developed..." + (show)

@hjw473 Hi, I have been on Vyvgart hytulo for a year. No side effects. I have had CIDP since I had COVID in the spring of 21'. I was on IVIG for a couple of years and I was able to walk with a rollator and drive short distances.
In the spring of 2025, I got really sick with the flu and had a relapse (may or may not be related)
I was told by multiple health professionals that I would not walk again; I said Watch me!!!!
I was walking (not well) by my daughter's wedding this past November and I continue to improve, not as quickly as I would like, but I am improving. I have a lot of my hand mobility back and I taught myself how to walk again. I started therapy to aid in my journey to get back as much mobility as I can.
I am also going to go see a neuromuscular doctor to see if they can do anything to assist me.
Never give up!!!!!

itsmeagain | @itsmeagain | 1 day ago

In reply to @becsbuddy "@orbit Welcome to Mayo Clinic Connect! Glad you’re here! MCC is a place where people can..." + (show)

@becsbuddy
@itsmeagain
Yes, I’ve been getting Iv treatments for 4 years twice a month. Helped me in learning to walk again but dr and I agreed I’ve plateaued about 8 months ago and now I’m not walking as well. Why? Who knows? I’m disappointed. Now we’ve switched to every 5 weeks instead of 4 to see how that works.
I get discouraged because I hear so many people who are now walking and have pretty much regained their former life and I’m nowhere near that . I’m still in a wheelchair.
I have no after effects from the treatment but I feel I’m going nowhere.
Sorry, that’s probably not what you wanted to hear.

Becky, Volunteer Mentor | @becsbuddy | 15 hours ago

In reply to @itsmeagain "@becsbuddy @itsmeagain Yes, I’ve been getting Iv treatments for 4 years twice a month. Helped me..." + (show)

@itsmeagain Please try not to compare yourself to others! It’s hard, but necessary. I don’t let myself do it either. I’m the only one on my journey and have to only help, and be myself. Yes, you’ve had a setback, but as long as You keep trying, you’ll gain confidence in yourself and get better and better. Trust yourself!
What is one thing that you’ve been successful at this past week!

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