Treatment with Rituximab - Anybody had this?

[Timmi]

I have been treated with IVIG (Intragam) for the last 2 years. The trearment is very effective for short periods but I relapse about a week before my next treatment is due. I have tried supplementing the treatment with anti rejection drugs but they don't seem to have any effect. Now my Neurologist wants me to try Rituximab (MabThera). From what I have read and been told there are some quite serious risks invoved using this treatment. Has anybody here got experience with this therapy and has it been effective? Have you had side effects? Any information would be gratefully recieved.
Thanks.

 

[laurel]

Hi Timmi. My husband has CIDP and receives IVIG every 3 weeks. He is in the process of trying to lower the dose, and it is not going well i.e when he drops the dose his hand loses strength and function. So he will likely face Cellcept down the road due to the high cost of the IVIG. There are membes on the GBS/CIDP Forum that have experience with Rutuximab. You could get some info from them.
Laurel

 

[laurel]

Timmi here is the site Forums - Powered by vBulletin
Laurel

 

[Peg B]

Hi Timmi,

No I only get the IVIG. How ofter do you get IVIG? Do you need it more ofter? For my first 2 years I got it every two weeks. Now every 3, with some rundown a couple of days before. Peg

 

[Timmi]

Hi Peg, I get the IVIG once a month (two days running), Mainly because I am working away a lot and that is the most suitable for me. Like you, mine starts to run down after about 3 weeks. By the time I get my next lot I can not write. A couple of days after IVIG my hand is good again and apart from a very weak thumb, it's almost as good as new. Hopefully with the Rituximab eventually I'll have no relapse between IVIG, and maybe even reduce IVIG. At least thats the idea. As we all know, what works for one doesn't necessarily work for the other.
I'll post on the forum if it is successful.