1. < Autoimmune Diseases

Anyone had IVIG Infusions for CIDP ceased after a number of years?

Posted by yvonne111 @yvonne111, Apr 2 1:30am

I have been receiving IVIG infusions every four weeks for a number of years.
Another neurologist told me that the effect of IVIG weakens over time. It has been shown that it will provide less benefits to the patient, as the myelin on the nerves can only recover so much?

He suggested that a break from the infusions will possibly be considered. I asked him what results he would expect, considering my file? Told me that I would most likely need to use a walking aid. I could not work in my current role with any kind of walking aid.

This has not happened yet, but I am trying to gather information. I would appreciate it if anyone has something to add or has heard of this previously.

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reubenwithcidp | @reubenwithcidp | Apr 2 9:22pm

I have been on IVIG infusions every 3 weeks for just over a year. I haven't heard anything about reduced effect over time. Mine seemed to be more impactful after about 10 months. I have heard that sometimes Medicare will want to try to wean you off of these after you've been on for a couple of years to see if they are still needed. Also, my neurologist said the reason for 3 weeks between them is that it has a half life of 3 weeks (I haven't looked anywhere to confirm this).

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1 reply
yvonne111 | @yvonne111 | Apr 3 5:13am
In reply to @reubenwithcidp "I have been on IVIG infusions every 3 weeks for just over a year. I haven't..." + (show)
@reubenwithcidp

I have been on IVIG infusions every 3 weeks for just over a year. I haven't heard anything about reduced effect over time. Mine seemed to be more impactful after about 10 months. I have heard that sometimes Medicare will want to try to wean you off of these after you've been on for a couple of years to see if they are still needed. Also, my neurologist said the reason for 3 weeks between them is that it has a half life of 3 weeks (I haven't looked anywhere to confirm this).

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@reubenwithcidp

Thank you for that information.
It will be interesting to speak to the neurologist and understand why they may make this decision.
I would have thought it would happen if the infusion was ineffective, but perhaps money will be the deciding factor.

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danawyn | @danawyn | Apr 4 12:59pm

I was on IvIG infusions at home every 2 weeks for 10 years. My symptoms diminished over time and my doctor and I discussed switching to ScIG. Since I was feeling good, we decided no stop treatment and see how I responded. I have now been treatment fee for 16 months and feeling great (aside from recovering from being hit by a car (ugh!). I still volunteer with the GBS/CIDP foundation because they were my lifeline for a lone time. Giving back always helps.

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1 reply
yvonne111 | @yvonne111 | Apr 5 7:07am
In reply to @danawyn "I was on IvIG infusions at home every 2 weeks for 10 years. My symptoms diminished..." + (show)
@danawyn

I was on IvIG infusions at home every 2 weeks for 10 years. My symptoms diminished over time and my doctor and I discussed switching to ScIG. Since I was feeling good, we decided no stop treatment and see how I responded. I have now been treatment fee for 16 months and feeling great (aside from recovering from being hit by a car (ugh!). I still volunteer with the GBS/CIDP foundation because they were my lifeline for a lone time. Giving back always helps.

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@danawyn
I am pleased to hear of your improvement and progress. That’s definitely a great reason to stop the infusions. Thank you for sharing your experience.

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artemis1886 | @artemis1886 | Apr 16 2:18am

When you stop IVIG the neuropathy progresses a lot faster. I was on it from age 10-18. That was for 8 years the only reason went off of it fell off my parents insurance. I was told by Dr Anne Oaklander in Boston a research neurologist that if I would have remained on it that I wouldn’t be in the shape I am in today. I have never been told that your body quit responding to it. It has been proven stopping IvIG for neuropathy will cause progression. Once you are on it it’s for the rest of your life.
https://www.sciencedirect.com/science/article/abs/pii/S0022510X24004490
Here is another article. Mine is autoimmune.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9166547/#:~:text=Adrichem%20et%20al.,in%20clinically%20stable%20CIDP%20patients.

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1 reply
suetex | @suetex | Apr 16 7:28pm
In reply to @artemis1886 "When you stop IVIG the neuropathy progresses a lot faster. I was on it from age..." + (show)
@artemis1886

When you stop IVIG the neuropathy progresses a lot faster. I was on it from age 10-18. That was for 8 years the only reason went off of it fell off my parents insurance. I was told by Dr Anne Oaklander in Boston a research neurologist that if I would have remained on it that I wouldn’t be in the shape I am in today. I have never been told that your body quit responding to it. It has been proven stopping IvIG for neuropathy will cause progression. Once you are on it it’s for the rest of your life.
https://www.sciencedirect.com/science/article/abs/pii/S0022510X24004490
Here is another article. Mine is autoimmune.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9166547/#:~:text=Adrichem%20et%20al.,in%20clinically%20stable%20CIDP%20patients.

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My thoughts about stopping IvIg (for Sjogren's) are because my veins are starting to blow-they won't hold the pressure of the drip. I suspect my age (78) has something to do with it. It makes sense to get a port if you are having chemo with a finite treatment time, but mine will be open ended. Eventually I will get an infection in the port and that will be a mess. Better I face it now. Afterall, it is my body attacking itself and I should find a way through this. I've had a lifetime of doing that.

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1 reply
artemis1886 | @artemis1886 | Apr 16 9:04pm
In reply to @suetex "My thoughts about stopping IvIg (for Sjogren's) are because my veins are starting to blow-they won't..." + (show)
@suetex

My thoughts about stopping IvIg (for Sjogren's) are because my veins are starting to blow-they won't hold the pressure of the drip. I suspect my age (78) has something to do with it. It makes sense to get a port if you are having chemo with a finite treatment time, but mine will be open ended. Eventually I will get an infection in the port and that will be a mess. Better I face it now. Afterall, it is my body attacking itself and I should find a way through this. I've had a lifetime of doing that.

Jump to this post

I had mrsa bacterial spinal meningitis in 2002 and lost all my veins. When I have procedures done they either go through my neck or I have a PICC line put in. I have had a Picc line for three months after the bacterial spinal meningitis and then oral antibiotics for another three months. I prefer the Picc line verses the one through my neck. When I get my IVIG I get a Picc line to go with it.

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1 reply
suetex | @suetex | Apr 17 2:57pm
In reply to @artemis1886 "I had mrsa bacterial spinal meningitis in 2002 and lost all my veins. When I have..." + (show)
@artemis1886

I had mrsa bacterial spinal meningitis in 2002 and lost all my veins. When I have procedures done they either go through my neck or I have a PICC line put in. I have had a Picc line for three months after the bacterial spinal meningitis and then oral antibiotics for another three months. I prefer the Picc line verses the one through my neck. When I get my IVIG I get a Picc line to go with it.

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Thank you for all your insights, they are all being thought about. I must say, you are a real trooper!

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