Has anyone just stopped responding to IVIG?
July 11, 2019 at 9:04 pm
I was diagnosed with CIDP in January. Ever since I’ve been treated with IVIG and responded well, to the point of walking unassisted.
Now, after a treatment of IVIG every two weeks it seems to have stopped working. I’m getting weaker everyday. Has anyone else experienced this?
July 13, 2019 at 10:57 am
Unfortunately, that’s the down side of the chronic part of our disease. It could be that you’ve stopped responding to IVig, or it could be, like me, you get periods where the CIDP acts up.
My theory is that when our CIDP acts up, it overwhelms the medicine we are on. In my case, around last year at this time, out of the blue, my symptoms started returning. Not to the point of not being able to walk, but numbness, weakness, lack of energy and so on.
It has taken almost a year to shake that off. The IVig, I’m sure has kept the worst of the symptoms at bay.
With that being said, my neurologist started me on Imuran in April, and that combined with the IVig has, I think, slowly reduced my symptoms.
In other words, see if your doctor will add another medicine to help you combat your current symptoms.
July 16, 2019 at 2:01 am
IVIG used to be very effective for me every 4 weeks. I’ve quit responding as well though and I get a huge dose every 2 weeks now. I still get some benefit for a short while but nothing near like it was the first year I was on it. Talking with neuro about an appropriate immunosuppresant that insurance will cover to see if it will help.
July 16, 2019 at 10:38 pm
cer100, I think we are in the same boat. I remember the first few times I received IVig. It was a miracle drug!
But with weekly doses, I think it maintains my condition. Maybe this is as far as I recover.
I did start Imuran in May. It supposedly takes 6 months to build up in one’s system and for you to see maximum results.
Right now, I feel a bit better, so I have some hope that things will improve a bit more.
August 1, 2019 at 11:00 pm
I see to be going through that right now, last two full loading doese did nothing and if anything, I have regressed.
August 14, 2019 at 7:45 am
I think this is happening to me also, after getting my IVIG every 4 weeks for the last 3 years it seems to be less effective. I have tried Imuran last Feb. but that was a failed treatment, now every month as I get closer to infusion date I get weaker and this month I just crashed, stress and hot weather may have something to do with this flair up. I still am concerned this might be time to go to 3 week spacing on infusions, I start new insurance Sept.1st and have a appointment with a new neurologist to explore other options.
September 9, 2019 at 4:54 pm
I was diagnosed with madSam about four years ago. Three months ago with the shortage and everything of IVIG I noticed things weren’t quite as good for me. Two months ago I did two rounds of rituximab but see no results yet. My right side is almost completely useless in these last two months so I had a bridge of 80 grams of IVIG 5 days ago. I am seeing no results from the IVIG so far and nothing from the rituximab.
September 9, 2019 at 9:28 pm
What is your insurance and how did you or your neurologist get them to approve rituximab for CIDP?
September 9, 2019 at 10:20 pm
Cer100…I am in Montana. Been here 2 years. Insurance is Humana. Took a Pharmacist, a PA, a nurse, a neurologist and their team months to get Rituxan approved…I feel blessed to have them.
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