Hi all,
My dad has CIDP since 2 years now.. IVIG has no more effect on him and today he tried another treatment: plasma exchange.
Everything went wrong, during the treatment he felt very bad and had to suspend. Symptoms were: headache, hands pain and blurred vision.
I kindly ask you if you have any advice or similar experience. Everything would be so appreciated!
Thank you very much
Maria
How much IvIG? Small dose, large dose? How long has he had CIDP? My IvIg didn't work until I hit a loading dose of 240 mg/ month.
I think you need to provide this forum with more information on your Dad's condition.
Don;t give up on him!
Dear esteban
My dad has CIDP since 2 years now. IVIG was wonderful at the beginning, 125 mg a month and he was fine! Now he takes 60mg a week, in two days, every week of the month (total=240mg every month) and the effect is way more weak on him.
I would like to have more information about this new treatment, plasma exchange, and know if someone else here has ever had bad symptoms while doing it, symptoms like the ones that I described.
Thank you very much
estaban said:
How much IvIG? Small dose, large dose? How long has he had CIDP? My IvIg didn't work until I hit a loading dose of 240 mg/ month.
I think you need to provide this forum with more information on your Dad's condition.
Don;t give up on him!
Hi Maria! The only bad reaction I’ve had when doing plasma exchange was when I got lightheaded when my blood pressure got too low. The nurses are supposed to monitor that closely…also they check different things during the treatments to be sure all of my numbers are okay.
Hope that helps a little!
Paula
I got very light headed and had severe tingling sensations in my arms during one treatment. They slowed down the process and that helped a lot. I had no side affects following treatments.
I agree with what others have said. The IVIG was rough at first and I didn't feel like it was helping.. My name is Mary, but my sign on shows my name as Mark, my error when I typed it. My husband George, has had both treatments. I felt the Plasma really helped him. The first one he got had him feeling better for a year. But sometimes people can't tolerate certain things. The Neurologist should help a lot on this. I personally think, George responded best when they interchanged the treatments. One Plasma exchange, which involved a 10 day stay at the hospital. That is intense.... then followed up by IVIG treatments. It's a lot for a body to go through, but his CIDP is severe.
Thanks a lot for all of your replies! This forum makes me feel less alone.