Need feedback on the use of Rituxan

A board to discuss the anticipated multiple sclerosis treatment Rituxan.
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ssmme
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Need feedback on the use of Rituxan

Post by ssmme » Thu Oct 30, 2014 6:14 am

My neuro made a personal call to me this morning. My ms is acting particularly aggressive lately. He wants me to start rituxan. Does it work for you? What side effects have you experienced? How often have you had treatment? Do you get treatment intraveneously or intrathecally? Do they even offer this treatment intrathecally? I want to go in with my eyes wide open.

Thanks!
Marcia

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ssmme
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Re: Need feedback on the use of Rituxan

Post by ssmme » Fri Nov 21, 2014 1:32 pm

No one out here has used rituxan?
Marcia

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NHE
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Re: Need feedback on the use of Rituxan

Post by NHE » Fri Nov 21, 2014 4:29 pm

Hi Marcia,
Have you read about Anonymoose's experiences with Rituxan? She did an intrathecal treatment.

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ssmme
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Re: Need feedback on the use of Rituxan

Post by ssmme » Fri Dec 12, 2014 6:48 am

Thanks, NHE! My neuro wants me on IV treatment twice spaced a week or two apart every six months. I'm going through pre-approval and blood testing prior to starting.
Marcia

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Re: Need feedback on the use of Rituxan

Post by LR1234 » Sun Dec 14, 2014 11:17 am

Hi I have used rituxan and for me personally it has been life changing (but might be in combination with other things)....I do also take antivirals everyday and have changed my diet to drinking lots of green smoothies, I have gone on the pill which balances out my hormones. (I also still take copaxone)
Let us know how you get on though, good luck x

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Re: Need feedback on the use of Rituxan

Post by ssmme » Mon Dec 15, 2014 10:18 am

Thanks LR1234!
Marcia

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Re: Need feedback on the use of Rituxan

Post by spihota71 » Tue Dec 16, 2014 6:24 pm

Same for me - past 3 mri's I've had new lesions. The thought is gylenia is not enough. Rituxan is being considered but scared by the pml

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Re: Need feedback on the use of Rituxan

Post by ssmme » Tue Jan 06, 2015 9:42 am

Spihota71,

I am JCV positive also but my neuro thinks the risk is minimal. On a counternote, he feels the tysabri risk is too high so for me it's rituxan or nothing. I'm trying to decide between doing nothing or doing rituxan. I have yet to hear any first hand negative experiences with it and my doctor has never treated a patient with it. Other neuro's in his practice have but he hasn't.
Marcia

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Re: Need feedback on the use of Rituxan

Post by lyndacarol » Tue Jan 06, 2015 11:41 am

ssmme wrote:Spihota71,

I am JCV positive also but my neuro thinks the risk is minimal. On a counternote, he feels the tysabri risk is too high so for me it's rituxan or nothing. I'm trying to decide between doing nothing or doing rituxan. I have yet to hear any first hand negative experiences with it and my doctor has never treated a patient with it. Other neuro's in his practice have but he hasn't.
Marcia, I am on no MS medication, and so may not have a right to comment. But out of my curiosity, I hope you will accept my question:

I know the Tysabri is a monoclonal antibody. Rituximab (Rituxan) is also a monoclonal antibody. How could one be better or more dangerous than the other?

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Re: Need feedback on the use of Rituxan

Post by spihota71 » Thu Jan 08, 2015 2:01 pm

Going thru the approval process very frustrating - was denied by insurance as Rituxan has not been approved by the FDA for MS. still trying though.

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Re: Need feedback on the use of Rituxan

Post by Mockmom » Mon May 04, 2015 6:38 pm

Hi guys. I just started RITUXAN. I started 4/27/15 half dose and on 5/11/15 I go back for the full dose. So far I didn't have any side effects just headache for 2 days but not bad. Now with the full dose idk how it will be..I wil check back and let evry1 know. My Neuro thinks I maybe-might-could be slipping into Pms and thinks RITUXAN may help. I currantly am lesion-free on my spine but my brain is a mess!
So with RITUXAN it's half dose, 2weeks later the full dose and then every 6 months..
Take care all
Margaret

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Re: Need feedback on the use of Rituxan

Post by Rabies » Tue Nov 03, 2015 6:45 pm

I got ms in Feb 2015. Sudden onset.Wound up in a wheelchair.Tysabri was useless!
Rituximab is brilliant. Had an infusion reaction. The rate was lowered then all was fine.
I GO TO BED AT NIGHT WONDERING WHAT WILL I FIND WORKING IN THE MORNING! At the moment it is my colon.No la atives for a few days now and normal mptions

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Re: Need feedback on the use of Rituxan

Post by Rabies » Tue Nov 03, 2015 6:56 pm

Stupid phone.. lol. Anyway,the thing is that with the 'B'cells dead, your body has a chance to heal.Looking at getting back into a walker next week. Maybe walking stick before xmas (I hope).Only 1 infusion every 6 months too! Not a cure. But close. If it keeps on like this I'll be back at work again (I owned a small newspaper).Then I can raise community awareness of ms and do some serious fundraising!
Go for the Rituximab!

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Re: Need feedback on the use of Rituxan

Post by Rabies » Sun Nov 15, 2015 5:43 pm

I was diagnosed in Feb this year,although, as usual,with hindsight there were a few warnings for a couple of years prior. Double vision, numbness in legs..It hit suddenly,no warning. One day I woke and could not walk. It took weeks,but eventually I was diagnosed and started on Tysabri. Didn't do much. had 3 relapses in 6months. Then switched to Rituximab after the most recent and nastiest relapse, on Tysabri, I lost all use of legs problems with skin sensations on scalp,legs and chest. Use of hands,control and feeling.
Within 72 hours the feeling in my scalp returned. followed the next day with movement of legs, then use of hand. Every day brought something new. I even felt the nerve to my colon start up again.
It has turned my life around. Yesterday I used my walker again. First time since Sept 14.
f you get the chance - take it with both hands!

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