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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Mafalda | @mafalda | Jun 11, 2023

In reply to @raphyboi "Thanks for your reply. I had three plasma phoresus treatments and ended up in the hospital..." + (show)

Why did you end up unable to move? Was the result of the plasmapheresis?

savomic | @savomic | Jun 12, 2023

Hi, I have the DADS-M version of CIDP. Distal Aquired Demyelinating Symmetric Neuropathy with the presence of IgM kappa M protein. No response from IVIG. Now on Rituximab. Anybody else?

casey1329 | @casey1329 | Jun 12, 2023

Hi All, my story may or may not be of any note but here it is. My 71 yr. old husband had balance problems and fell several times and couldn't get up. We both had all of the 5 covid shots & boosters. First neurologist said he had Parkinson's and put him on medication for it. Didn't seem right, so we went for a second opinion. Second neurologist said he had CIDP and put him on infusions 3 days a month. Nothing changed, so we went for a third opinion. This neurologist said he didn't know what was wrong with my husband. Now mind you all of these doctors ran the exact same tests and had different reasons why my husband had balance issues and was falling. So again took my husband, not willingly, to yet another neurologist. I picked this one because he studied in Dublin. He diagnosed, distal sensory axonal polyneuropathy caused by alcohol abuse. He stopped doing and is doing much better.

milliemae | @milliemae | Jun 12, 2023

Yes 5 days in a row I believe that it’s 30 mg takes about 3 hours. Small price for being able to walk and not be painful

kim1234 | @kim1234 | Jun 13, 2023

In reply to @mafalda "Hi, when you say infusions for 5 days, are they done in a Hospital? are they..." + (show)

Hi there yes done in hospital as I have the hospital plan cover only. Yes 5 dys in a row takes half an hour. Yes intravenous....Im on a break now with meds to help the body recover, especially the stomach lining....go in again 26th of June for 5 dys will be interesting to see how I feel after that and whether the pain relief will last longer...

milliemae | @milliemae | Jun 13, 2023

What is the dosage? We do as out patient infusion therapy center. They had to run somewhat slower because it was causing back pain and headache. Nurse said it’s a higher dose. Hopefully it helps.

mabelandlynne | @mabelandlynne | Jun 14, 2023

In reply to @milliemae "Yes 5 days in a row I believe that it’s 30 mg takes about 3 hours...." + (show)

Is this covered by Medicare, or my secondary Ins. - United Healthcare? How much does this cost?

milliemae | @milliemae | Jun 14, 2023

Our insurance/ Medicare covers for this after we pay $3k deductible. It’s very expensive for the week it’s about $25k. But after we pay the deductible it’s covered for the year

paktoledo | @paktoledo | Jun 14, 2023

In reply to @mabelandlynne "Is this covered by Medicare, or my secondary Ins. - United Healthcare? How much does this..." + (show)

Good question!