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Anyone getting Rituximab for PPMS?

Posted: Wed Nov 02, 2016 6:30 am
by HUD45
I know the FDA has fast tracked the ocrelizumab trials but is there anyone out there with PPMS or SPMS getting the infusions?

I know of someone about to start after working through the "insurance system" with their Neuro. If so, how is it working and how are the side effects?

I thought there would be more chatter on this site about the impending first drug approved for PPMS. I know about the studies, I am looking for individual opinions of current users.

Thanks in advance...HUD

Re: Anyone getting Rituximab for PPMS?

Posted: Sun Nov 20, 2016 3:41 am
by mia72797
I was on Tysabri first and that threw my liver enzymes out of wack, so now she has me on Solumedrol until the Retuximab is approved for me next month. I am a little concerned because of all of the pre-medication stuff. First they gotta give you Tylenol, benedryl, solumedrol and then the rituximab.

I'm sensitive to the side effects of the Solumedrol to begin with. I have to ask them to drip it at 2 hours, just so that the side effects are easier to manage. I am hesitant to find out how that is goin to play into the rest of the meds, not mention that I have never been on the rituximab. She said that most people do awesome on it. The truth is I would be looking forward to the relief that she said that it could bring for the 6 months after.

I calculate that it would take me a good solid day in the infusion center. Anxious to read who has had success on this med?

Re: Anyone getting Rituximab for PPMS?

Posted: Mon Nov 21, 2016 8:15 am
by HUD45
Thanks mia,

I wonder if that premedication regimin is standard for all new patients or just in your particular case?

Also, how was the process to authorize the med through insurance?

I can't deal with solumedrol yuk


Re: Anyone getting Rituximab for PPMS?

Posted: Mon Dec 05, 2016 10:00 am
by chips
My Wife has SPMS and has just taken her 3 cycle of the drug. Our doctors managed to get the insurance covered without a problem but I'm not sure how it was pushed through last Dec 2015. She has tried so many drugs but Tysabri was the first to stop the MS. During the first year she would actually improve for 2 weeks after the infusion. But the risks were so high and the short benefits seemed to deminish so with agreement from our doctor we moved on to other new meds that didn't work. Then we tried Rituximab and the common side effect was diarrhea. That we could work with. She has also been more susceptible to urinary infections. So we have to keep a close eye on those and have doctors check more frequently. The first infusion she had a quick rash/redness that went away with Benadryl. The redness also disappeared the second the infusion was stopped and started as soon as the infusion started again. The worst of it was the first time. Now it's much milder or not at all. We haven't had any improvement but it seems to have stopped her MS from getting worse and that's fantastic as far as I'm concerned. the only drug to do that for my wife since Tysabri. If research can stop the progression then we can find the patience for new drugs to be developed to repair the damage. Good luck.

Re: Anyone getting Rituximab for PPMS?

Posted: Fri Feb 09, 2018 5:23 am
by zen2010
HUD45 wrote:I am looking for individual opinions of current users
Bump :smile:

I guess many Msers with progressive ms are now taking/have been taking rituximab for some time.
Can you pls share your feedbacks?
It would be really interesting for people with PP/SP MS to get this info.


As for as I am concerned, I have PPMS with relapses
I received two shots of rituximab on January01st and 16th.
No improvement so far

Take care