1. < Autoimmune Diseases

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

Posted by yvonne111 @yvonne111, 5 days ago

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.

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

reubenwithcidp | @reubenwithcidp | 4 days ago

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).

REPLY
1 reply
yvonne111 | @yvonne111 | 3 days ago
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).

Jump to this post

@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.

REPLY
danawyn | @danawyn | 2 days ago

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.

REPLY
1 reply
yvonne111 | @yvonne111 | 1 day ago
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.

Jump to this post

@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.

REPLY
Please sign in or register to post a reply.