So I'm deciding between Tusabri (still waiting for blood results to see if I'm JC virus positive, which if.l I am will take this off the table), rituximab, and the new infusion coming out in December. If anyone would be willing to share their experiences or thoughts on any of these I would greatly appreciate it. Thanks!
Hi All,
Personally i think rituxan is the best med available for RR, SP PP MS. Its been used for MS since 2005. Biogens greed for money made them stop clinical trials after 3 years because rituxan was soon to be generic med. Instead they started new clinical trials on Ocrelizumab, a sister medication for MS.
Ive had MS for 30 years, been on Rituxan for 3.5 years. Im jcv+ and Rituxan has halted my MS progression. No new or active lesions nor relapse. In the first year of use I LOST a LESION. I've had less side effects with Rituxan than Tysabri.
Rituxan has a VERY LOW rate of PML. Ive not read of an MS patient getting PML from rituxan.
When used as a cancer med in higher doses i believe PML risk 1/25000.
Usually you have 2 infusions 2 weeks apart then follow up infusions every 6 months. Side effects range from nothing, to flu like symptoms, or fatigue for about a week. Each infusion after the first 2 are much easier. After you know how you react, if you drive, you can drive yourself home.
I was on tysabri for 23 infusions and transitioned well to Rituxan. It keeps Tysabri rebound relapses away.
No need for Tysabri wash out. Best used 4-5 weeks after last Tysabri infusion.
USC UCLA and Kaiser LAMC under Dr Langer, Dr Beaber and others, use it as 1st line defence and people are not progressing. For newly DX they may never have another relapse again. Its not a cure, but some never experience MS symptoms ever again.
Please consider, especially if you are jcv+, and have active MS.
I'm happy to answer any questions.
I agree. I feel like Fuck it. Disease gonna do what it wants. Really don't know abt these meda.. I like my Marijuana. Helps better any these rotten medsWish I lived in legal state. Mo judge messed that up for us..
I've been on Tysabri for about 14 months now. The risks scare me, but the infusions have helped me tremendously. I am not JCV positive, but have to keep on an eye on that. I think you are right that PML is becoming a risk with many drugs now.
I opted no to all meds because of the PML factor as well as the possibility that these drugs may cause other serious health effects (liver failure,etc). I figure it's not a cure, so why play with the possibility they will cause more harm to other parts of my body which as of today are not affected. (Crossing fingers and toes.) I am JCV positive (high risk) so it's not on the table for me, plus I'm PPMS, so really, no drugs out there till the December possibility. I will watch the reports to see how the newest drug does before I go on it, if at all. I think it's a personal decision, but by all means, do your homework! Good luck
Thankyou for the med tips. I also heard and read about Rituxan. Its an infusion which scares me, but this whole disease scares me. But I don't let it get me down. You play the cards that are dealt to you. Just do yur best and no one has the right to criticize you. Have a great weekend Susan. Cheers.