Time it Takes for Rituxan to Work on MS

A board to discuss the anticipated multiple sclerosis treatment Rituxan.
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DavidF
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Time it Takes for Rituxan to Work on MS

Post by DavidF »

This month I had my first two infusions of Rituxan to treat my RRMS and I am wondering how long before I 'feel better?' Should it be immediate - once the B cells are targeted/depleted? Or is there a delay if you've been living with some activity at the time of treatment?

I ask primarily because I tend to respond immediately to IV steroids when given for a relapse. My dizziness, strength, coordination and diplopia all feel much better during such treatment.

I had minimal to no side effects from the Rituxan infusion - felt great for a week - leading up to second infusion. Now - just days after second infusion - I feel like the MS symptoms i know too well - feeling off balance, dizzy, etc are back. I'm certain it's not a side effect of the drug - because again it's familiar. Diplopia is on too. I'm managing well, but just frustrated it wasn't a magic bullet (not that it was ever going to be, but...).

If anyone knows how 'soon' a person who is likely to improve WILL improve on Rituxan, I would appreciate any information or experience stories. I've seen 3 months following infusion for people who have RA...so maybe it's a matter of waiting? Obviously I don't want this to fail.

Thank you -
David
LR1234
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Re: Time it Takes for Rituxan to Work on MS

Post by LR1234 »

I had Rituximab the first time in March 2014 and then again in April (2 weeks apart) I felt so so ill during the whole of May (I thought I had made a huge mistake taking Rituxan) All my MS symptoms were present, I also had bad vision, fatigue, wobbly legs etc then toward the end of June I suddenly felt so much better! the best I have felt in years and I still do.
I really feel Rituximab has changed my life for the better, I hope it works for you too.
DavidF
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Re: Time it Takes for Rituxan to Work on MS

Post by DavidF »

Family Elder - thank you very much for that encouraging reply. Being on a drug that wasn't working (Tecfidera) up to my recent first infusion, I know I have lost some protective ground and hopefully in my case too - Rituxan will become the protector. Glad to hear you are doing better - you made my night. I wish you good continued progress. Best - David
Anonymoose
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Re: Time it Takes for Rituxan to Work on MS

Post by Anonymoose »

I had a more aggressive protocol than most and felt pretty messed up for the following four months. I've felt better than pre-rituxan since, not perfect but definitely better. It's been about 2.25 years since I took it.

Hope the good times kick in for you soon.
MSmysavior
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Re: Time it Takes for Rituxan to Work on MS

Post by MSmysavior »

I will be asking my third full RITUXAN infusion in a weeks time. I am in the middle of a round of outpatient IV STEROIDS X5/days then orally. This is the first time I ever had steroids.
What I have noticed (for me) is when It gets close to my next RITUXAN infusion time, my body seems to "crave" it. That's why I'm on steroids..Im just having a little "hiccup".
I wish it was given to me every 5months.. Other than that, I have had no side effects. It works very well or me.
God Bless.
schroederra
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Re: Time it Takes for Rituxan to Work on MS

Post by schroederra »

I finished the 2nd of the two infusions that comprise 1 course of rituxan March 13. I got through the steroid induced sleepless first nights and enjoyed a bit of super strength, but now, 9 weeks into the treatment, I don't feel so well. My legs are terribly weak, and I am still walking around on two hiking sticks, as I have been since September 2015. Encouraged to read that at least two report not feeling any better until months 3-4.
mstegman
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Re: Time it Takes for Rituxan to Work on MS

Post by mstegman »

I have SPMS and had 2 Rituximab infusions in March, 2016, separated by 2 weeks. I have seen no improvement in my leg strength of fatigue. Should I give it more time to work? Before the infusions I was taking Tecfidera. I am frustrated. Mark
Staymotivated
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Re: Time it Takes for Rituxan to Work on MS

Post by Staymotivated »

Little history first. I've had ms for 12 years. First on avonex for about 2 years with multiple relapses. Switched to copaxone, huge improvement. Minimal relapses and felt stronger than ever. Lasted about 8 years when I started to go downhill again. Switched to Gilenya but had heart issue on first dose. Then switched to Tecfidera with no results. Couldn't takes Tsabri, Jc positive. Neuro filled me with steroids and put me back on copaxone. Continue decrease in walking. Now using a cane I was referred by neuro to and ms specialist neuro. Which leads me to my current treatment. I had my first infusion 7/11/16. About a week after my first infusion I started feeling better. My balance seemed better and I could wiggle my toes on my right foot. I couldn't believe it actually felt like improvement. Super excited for my second dose thing it can only lead to even better resist. False positive. After taking my second infusion I'm feeling absolutely horrible. Even less use of my leg than before. I read on here that it takes a while after second infusion for real results. Fingers crossed this is true.
Sararezaeikermani
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Re: Time it Takes for Rituxan to Work on MS

Post by Sararezaeikermani »

Hi every one. I am Sara.35. I have had ms for 12 years.I was so normal till 2years ago.suddenly I missed sb.after that my ms signs became to appear.I used to use rebeif.
I had some relapse.but I was great.2 years ago I got cancer.breast canser.after treatment my signs appeared.l used Tysabri for 6 months.but it didn't helpful.it was so strong.I couldn't walk any more.after that I used demetylfomarat for 6 months.it was better.but I didn't have any stops for relapse.
After that I used retuximab.
After second infusion .I felt so great.I could walk.not normally.but I was so happy.
But after one months my ms signs appeared again.I have relapse.too weak.I walk hard.now I am in biginiging of forth month.I feel alittlel better.I am afraid.
My Dr said .I must wait till sixth month
Sararezaeikermani
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Re: Time it Takes for Rituxan to Work on MS

Post by Sararezaeikermani »

Sb help meeeeeeeeee.pleaseeeeeee
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lyndacarol
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Re: Time it Takes for Rituxan to Work on MS

Post by lyndacarol »

Sararezaeikermani wrote: I am Sara.35. I have had ms for 12 years.I was so normal till 2years ago.suddenly I missed sb.after that my ms signs became to appear.I used to use rebeif.
I had some relapse.but I was great.2 years ago I got cancer.breast canser.after treatment my signs appeared.l used Tysabri for 6 months.but it didn't helpful.it was so strong.I couldn't walk any more.after that I used demetylfomarat for 6 months.it was better.but I didn't have any stops for relapse.
After that I used retuximab.
After second infusion .I felt so great.I could walk.not normally.but I was so happy.
But after one months my ms signs appeared again.I have relapse.too weak.I walk hard.now I am in biginiging of forth month.I feel alittlel better.I am afraid.
My Dr said .I must wait till sixth month
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If you have not had the vitamin D blood test called "25-hydroxy D", see your doctor and ask for this test.
Sararezaeikermani
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Re: Time it Takes for Rituxan to Work on MS

Post by Sararezaeikermani »

Thanks for attention.
I always take a pill vitamin D.
I don't have cancer any more.
My MS is getting worse after chemitropy.
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lyndacarol
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Re: Time it Takes for Rituxan to Work on MS

Post by lyndacarol »

Sararezaeikermani wrote:Thanks for attention.
I always take a pill vitamin D.
I don't have cancer any more.
My MS is getting worse after chemitropy.
After taking vitamin D supplements for about 6 months, your doctor should order the vitamin D blood test (the 25-hydroxy D test) to learn if you have reached an adequate level of vitamin D in your blood (or if you need a larger daily dose).

Every person absorbs vitamin D at a different rate.

I am very happy to hear that you don't have cancer anymore, Sara.
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