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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

John, Volunteer Mentor | @johnbishop | Jun 14, 2023

In reply to @mabelandlynne "Where do we go to find the answer?" + (show)

A good place to start with the cost may be a quick call to your insurance rep for United Healthcare.

kim1234 | @kim1234 | Jun 15, 2023

I'm in South Africa so we have different medical aid options.....I am on hospital plan so they will only pay if I get admitted to hospital for the treatment. The moment I go to a centre for the infusion they will not pay!

milliemae | @milliemae | Jun 15, 2023

Call your insurance company

kayabbott | @kayabbott | Jun 15, 2023

In reply to @savomic "Hi, I have the DADS-M version of CIDP. Distal Aquired Demyelinating Symmetric Neuropathy with the presence..." + (show)

is the IgM kappa M protein associated with light chain kappa MGUS?

Mafalda | @mafalda | Jun 15, 2023

In reply to @savomic "Hi, I have the DADS-M version of CIDP. Distal Aquired Demyelinating Symmetric Neuropathy with the presence..." + (show)

How is it going with the Rituximab? any improvement? how many times?

savomic | @savomic | Jun 15, 2023

In reply to @mafalda "How is it going with the Rituximab? any improvement? how many times?" + (show)

Improvement on the blood test results, for example lowering the IGM kappa marker. Not so much improvement physically but stable.

savomic | @savomic | Jun 15, 2023

In reply to @kayabbott "is the IgM kappa M protein associated with light chain kappa MGUS?" + (show)

Yes but I believe this is a very complex matter.

sommerreign | @sommerreign | Jun 16, 2023

In reply to @paktoledo "Good question!" + (show)

Usually whatever Medicare covers, Your secondary ins will cover.
Some people only have Medicare & that is probably why the patient above had to pay, Medicare only covers 80% so UHC should pick up the other 20%. Call Mayo and ask them to make a determination of benefits for you prior to going there,

paktoledo | @paktoledo | Jun 16, 2023

Thank you! Sounds about right to me.Pat!

harley22 | @harley22 | Jun 16, 2023

I have had several rounds of IVIG infusions at 2days every 3 weeks.
First time was 4 months, and I felt nothing different.
My neuropathy symptoms weren’t any less,still had pins and needles in my feet and legs.
After half dozen neurologists, the latest one in Florida, encouraged me to try IVIG again, said I might need a year or more of them.
I was willing to try and just completed about 7 months of them, 2 days every 3 weeks at home.
Again I felt no improvement,so my doctor stopped them.
My veins started getting harder to find, and I’m just glad I didn’t go for a port,especially since the infusions weren’t working.