prednazone response after failed IVIG?

I’m not sure if you will find my story helpful to your situation, but I will share it none the less. I was diagnosed in May 2006 with GBS and treated with IVIG and then had 2 more relaspes by July that were treated with plasmaphoresis. In July I was started on prednisone and have been on it since. I am still on high doses which are not good for my body but everytime they try to wean them I have a relapse. I have had 3 so far about 10 days after the decrease of the prednisone. I started with a new neuro now who believes in regular IVIG and I will be starting methotrexate for immune suppression so hopefully I can get off the steroids. With the high dose steroids, progress was slow. I was receiving PT/OT also and the best function I got back in 8 months was walking with my walker and “practicing” with a quad cane. (My case was pretty debilitating and I had 3 relaspes which took me back) I have had minor side effects so far compared with others. I have the “moon” face, weight gain around the tummy, my fingers and feet swell at times, and increased appetite as well. The steroids can also cause sleepless nights as you are hyper feeling. Hopefully my long post had some info you can use! Good Luck. 🙂

Terry,
I was on IVIG for 3 1/2 yrs. every 3 weeks. Last July 06 I had a relapse the worst I’ve had thus far. I was switched to prednisone. 1000 mg infusions every 4 weeks. It has been 6 months on prednisone and next week I am going back to IVIG. After I recieve the prednisone I usually don’t sleep for a couple of days. Makes my skin feel like I have a bad sun burn and very red.
But small things to deal with compared to a relapse.
I hope you start to feel better!
Jim

The one good thing about them trying you on steroids is that if they work, it might be a good way to find out a true Dx. Steroids usually work fairly well for CIDP, in fact, I know now at the U of MN it is the first course of treatment offered. I was surprised to learn that, but I suppose maybe the rising cost of IVIG has something to do with that?

When IVIG & PP did nothing for me, steroids did give me back just enough function so that I could get out of the hospital (after 3 months.) I had weekly infusions of 1,000 mg of solumedrol for 21 months after that. There was a lot of weight gain, I had cataract surgery in both eyes, a rash all over my body, irritability, sleeplessness the day of the infusions, etc. But at the time I really needed them & my motto with CIDP has always been, “You do what you have to do.”

Terry,
Yes I did respond well with the IVIG, 35 grams every 3 weeks. I was also on nuerontin as well. No bad side effects from the IVIG. When I first started my arm would hurt, but as time passed (months) it didn’t bother anymore. It’s a trial and error on an individual basis. Infusions lasted 3 1/2 to 4 hours. If my arm started to hurt they would slow it down. Last July the pain was terrible. As things kept getting worse the Dr. decided to try Prednisone. I don’t remember how much but when I started the prednisone I recieved it every day for 5 days. Then every 4 weeks. At that time, last July- August my left hip and entire leg was giving me the most pain. Finally in Sept. an ultrasound was done on my leg. Multiple blood clots in the leg and the lungs(surprise). Actually today is my last day on warfarin (blood thinner). My first IVIG will be on the 27th. I hope that this time will go as good as when I first started.
The Drs. thoughts are if the IVIG can hold me stable the prednisone can be used if or when things get worse. The IVIG I get is Gammagard. I have never had any trouble in the past with the supply. It is very pricey. Thank goodness for a wonderful wife and good insurance! Sorry this is soooo long but certainly hope it helps.
Take Care,
Jim

Good luck on the 27 do hope all goes well for you. Do get back with us to let us all know how it went. We will be praying for you. Take care and god bless.