Hi, I have had gbs since 2001. I recovered reasonably well. The past couple of years have been very stressful and a lot of symotoms have returned. I am booked to have three ivig treatments and after that one a month. I had this treatment in the hospital but I don’t remember it. Has anyone had ivig recently? How did you feel during the treatments?
I would love to hear what you people know.
Best Heath!
I just had IVIG a couple of weeks ago. It was 5 treatments in 5 days. I don't recall any bad feelings from the drug, although they monitored me closely during the infusion. They would take my blood pressure every 5 minutes at the start and taper that off to one every half hour before it was done.
I had 5 days of treatments in the hospital in August this year. I didn't have any trouble with them. And I remember they monitored me closely too. They didnt talk like I would have to have anymore treatments. I have a brother in law that was diagnosed with CIDP I believe that is the right initials and he takes a treatment every 3 weeks and will indefinitely.
Thanks for ur em. I think I have cidp now. This wk I had three infusions of ivig.felt bad after the third one. How are u doing on cellcept? How does it differ from ivig? Thank u so much for all ur info.
mdolich said:
Have you discussed with your neuro about the possibility you may now be CIDP? I had a relapse two years after GBS and was re-diagnosed CIDP. Most people who end up having relapses after GBS are re-diagnosed CIDP, which is considered the chronic form/cousin of GBS. I now have to get IVIG on a regular basis. I was getting 80g of IVIG every three weeks since 2006, up until they put me on Cellcept in June of this year. Now I go every six weeks for my infusions. Might want to considered talking to your neuro about it.
Good Luck, “Stay Strong and keep a Positive Attitude”
I have had three transfusions and will start going every three weeks. Did u ever skip a treatment? If so, what happened?mi was planning on spending on spending two months with my daughter who lives in Florida. This winter. I guess I will have to come back to montreal for the treatments. How much ivig cost u? Mine is free due to our Medicare. It is not the first time that I am thankful to be under our Medicare system. Thanks so much for your response. Have a great weekend.
mdolich said:
So far I’m doing good on Cellcept. I was on Imuran but found I was intolerant to it. We have spaced out my infusions from every three weeks to every six weeks. Hoping to slowly wean off IVIG eventually. Both Imuran & Cellcept are immunosuppressant’s. They are used to help space out, or wean off IVIG infusions.
I just finished my first round of ivig. Five days, 3 hours each day. I felt the best I have since the onset of GBS! Now I'm scheduled for once a month for 5 months. It was easy! But I was at an out patient place.