Rituximab?: Hello my dear community... - My MSAA Community

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Rituximab?

canimambo profile image
6 Replies

Hello my dear community members,

I would like to start off by thanking each of you for taking the time to reply to my previous question. We are all in this fight together and having your support means more to me than you know.

I was recommended by by physician to start with Ocrevus as my Ms has been diagnosed as ppms and ocrevus ,i was told, is the most appropriate treatment to stop its deterioration. Since ocrevus is not available in this part of the world, the next best drug recommended was rituximab. What is your opinion? I am hesitant , since a recent course (three injections) of steroids(solumedrol)did nothing to improve my condition. All I was left with ,were side effects: insomnia ,something on my chest area resembling goosebumps , increased cramps etc.

I was first diagnosed in 2014- 2015 .The deterioraration started with my my right leg and progressed to my right hand which keeps getting worse. Does it necessarily follow that the left side of my body will also be affected.?

I am taking no treatment whatsoever at the moment,only physical exercises at home, treadmill, slow push-ups ,stretching etc etc.

All replies , comments and suggestions will be greatly appreciated. You are in my thoughts and prayers.

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canimambo profile image
canimambo
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6 Replies
starlight5 profile image
starlight5

My ms started on one side and eventually spread to both. It started around the ribcage and spread down to the feet. It keeps progressing, numbness, spasticity, weakness, etc. all keep increasing. I can only hope it doesn't start to spread upward, the thought of my hands having the numbness that my feet have is terrifying to me. Anything you can try to slow down progression gets my vote. I am on ocrevus now.

I did a round of IV steroids once, it did nothing for me either. Keep moving, stretching, and exercising as long as you can.

ahrogers profile image
ahrogers

Those of us who have all treatment options available often take it for granted.Ocrevus is a humanized form of Rituxan. Rituxan was being used for MS before Ocrevus was approved. Considering you have PPMS and there aren't many treatments approved to treat it, Rituxan seems like a logical choice.

Symptoms all depend on where the MS lesions are on your brain and spinal cord. If you only get lesions affecting one side you shouldn't expect it to automatically affect the other. Taking Rituxan will hopefully slow down any new lesions from forming.

Keep up the exercise and try to eat healthy to keep your general health as good as possible.

Good luck on your decision and MS journey!

palomino27 profile image
palomino27

Copaxone can be useful for PPMS but my doctor said it's only been found effective in males for PPMS. Not sure why.

hopeandgrace profile image
hopeandgrace

I have progressive MS (no times of remittances for me) and have been on Rituxan for 3 years. I can’t tell if it actually helps or not since I am told it’s just to slow the progression, but things have still gotten worse/ progressed for me since being on it. I would encourage you to definitely keep exercising! It was “move it or lose it” for me.

Weaver9 profile image
Weaver9

I have PPMS and was on rituximab for several years. Help me a lot for a while but then stopped helping. There are a lot of scary side effects but they are rare rare so I say why not. Sorry, I’m doing speech to text so sometimes it’s not perfect.😀

Neworleanslady profile image
Neworleanslady

I want to reply to you to let u know u have my support. I don’t have experience with steroids or rituximab. I don’t have too many more words of wisdom other than what’s been said here already. I hope you get on a safe treatment soon.

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