Cellcept or Rituxan any experiences?

[cklovesflowers]

Just wondering if anybody has experience with either Cellcept or Rituxan? These are the two my neurologist suggests trying. I would need to decide between the two.

At this time, I am putting this off. and seeing how stable I can keep myself by managing symptoms.

I understand that if there is something that is going to either slow progression or stop more attacks, it would be immunosuppressant therapy.

They said I would need to comment to two years minimum.

It will not fix what damage is already done. The hope would be to slow or stop further major damage.

My heart keeps saying "love" into your immune system and my head cannot wrap around long term suppression. So I am diligent with food choice, stretching, massage, meditation, alternative things such as acupuncture, protecting myself from triggers like protecting my skin, etc. etc.

I have had more than one round of steroid infusions and such. I know that helps. but somehow I just have hit a wall with this decision.
Right now my doctors are respecting my decision even though they disagree. and have given me parameters as to the need to say "hey, we need to be more aggressive. period." I appreciate their candor and respect. It makes it all easier.

So, simply your experiences would be helpful. thanks, C

[gjnl]

I don't have any experience with Rituxan for the purpose you would be taking it. I took it as part of the treatment for non-Hodgkins lymphoma.

I can say, for me, it was an easy drug to take. I did not experience any side effects.

Good luck.

[Sheri]

I have MS. Used Avonex for three yrs in early 2000s. No effect - just side effects. I'm waiting for non immunosuppressant drugs myself. Lots of autoimmune stuff in the works targeting gut microbiome, tolerance to "self" (think "allergy shots"), or even VERY targeted immunosuppressant. Supposedly people in early stages are advised to try to just hold progression down while waiting for better options. I'm 22 yrs in and still waiting for the better options. I'm feeling confident that we'll see some good stuff several years from now. Computing power and biotech methods have surged ahead. They do need funding, however. Tough decision but good luck!

[cklovesflowers]

thanks. gjnl, I appreciate you sharing you did not experience any side effects.

Sheri, yes, I read all the research I can on gut microbiome considering that is where much of our immune system resides. I agree, and yes, it is tough. I figured I wasn't the only one in this kind of question and consideration.

I want to hear what people have experienced, decided, and their experiences.

Thank you. have a good weekend.

[Sheri]

Four years after this post started and, alas, we still wait! I remember my university neurologist in 1999 saying, “Well, I can’t promise you a cure in five years, but certainly in ten.” Oh well! Clearly there’s a lot going on with microbiome, remylination, even now potential use of mRNA vaccination. From a functional standpoint, we can maybe look to either external robotics or some kind of neuro stim thing. I’m still not on any meds (PPMS) and hopefully won’t look back on that as being a bad call. I used to be certain that I’d have a second act tho at age 57 I’m not so sure any more. But I keep plugging along! How are you doing?