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Living with Polyneuropathy CIDP, GBS, & CMT

Chemo being suggested. Any feedback?


#1

Rituxan (Rituximab) is being proposed for my CIDP. Would appreciate any feedback about experience with this drug. I’m skeptical bc I had bad experience with Cytoxan. Grateful for your comments.


#2

Hello I’ve had 2 Rituximab infusions really can’t say they’ve helped me. I have monthly IVIG infusions which I’ve had for the past 14 months I only get 2 good weeks out of the month now. My health has declined really bad on the last 4 months I’ve just spent 3 weeks in hospital with a relapse and normally I feel better but I don’t. Good luck with you though it may work!


#3

Kenworth

Thank you for your reply. Perhaps 2 administration’s of Rituxan is not enough. Let’s hope that the benefit is still I come. I wish you the best.

Mike


#4

Hi Mike thank you for responding I’m due to go to my neurologist Tuesday to see if I can have more infusions hope this will work


#5

I’m seeing my neur tomorrow (Monday, May 21). We should compare notes after Tuesday. Good luck with that appointment


#6

Hoping both of you see improvement soon. My husband has CIDP, and had the first 2 doses of Rituximab in April. The next one will be in July. He had a bad rash from IViG, and his doctor felt Rituximab would be the right choice. No improvement yet, but remaining hopeful (some days, at least :)) Please keep us updated about how both of you progress, and I will do the same for how things are with us. Always helps to see someone offer some encouragement about a treatment one is starting or considering.


#7

Jacobs - Yes, the whole point of this forum is that we can support each other. Much preferred to going it alone, especially with these rare disorders which the average person around us can’t relate to. We shall see how the Rituxan works out. So glad you responded.

Mike


#8

Stretching my infusions out over the four-week period helped me enormously. I get one infusion a week for three weeks, then two in the fourth week. I stay on an even keel, my blood kevel of gamma remains steady, and I’ve made a lot of progress in the past year. Changing your schedule might help more than increasing the amount. Discuss this option with your doctor.


#9

Thank you Sandra. I have been on Ivig for 9 years at various doses and intervals. However, my CIDP has steadily progressed. Neuro now suspects I have a variant that doesn’t respond to treatment. We’ll see what the next step is.

Mike