Rituximab Therapy

[cks]

thanks for sharing. something to ask and consider when my bloodwork comes back.

[MSLazarus]

Good luck...🍀

I did want to mention as you go for blood work that I am JC positive but the number on the scale was low so I made the decision to continue. The benefit has been obvious for me...I wish the same for you. Then we will be two of the luckiest people anywhere!

[cks]

thank you for this thread

i go for my blood work in a little over a week. Rituxan was approved by my insurance.

i have been nervous and reluctant.

Reading through this thread has helped a lot.

i do hope it works.

this January i had a bad attack. now have very limited hand use. no finger flexion. and a feeding tube. among the other deficits i already have.

none the less, i am active from my bed until my new chair comes.

i continue to be inspired, challenged, here.

thx, C

[Irene]

I'm due for a Rituxan infusion tomorrow morning. This discussion has been helpful.
About me, I live in India, was dxd 8 years ago, have been on Avonex since. Some worsening and new spots on MRI have led to the shift

[MSLazarus]

Good news...

I have been on rituxan for about 5 years...
My neurologist and I used to stretch the time between infusions to about 8 months. Maybe a couple of years ago I pushed to go on the general protocol used for rituxan I nfusion of every 6 months.

What was happening was that the great positive effects would wear off and leave me in purgatory until the next infusion. This 6 month schedule works for me.

What has happened in my years on rituxan is a slow but steady improvement in aspects of my MS that matter the most to me. Each infusion from the beginning returned some level of energy. That has continued increasing so that days of fatigue are rare.

I have been able to stand and work on my farm. This only lasts for short times and by the end of a long row of picking something I am on my knees and crawling while I pick. I use a hard bushel to help me move along. But the time I can manage to walk is enough to change my farming trouble by 10%?

I am never sure of numbers but I have been improving on rituxan and along with adjustments to keep me doing what I want to do...life is better.

I do not mean to mislead. My situation is better but not one that is in any way easy. It is just easier with rituxan. And maybe some lost abilities have returned because of rituxan. Maybe.

[AMFADVENTURES]

Well, made it nearly 11 months before the target B cells began to regenerate, finally kind of begged for another infusion. My fear is that if the MS does flair back up, being secondary progressive makes it significantly more difficult to recover from any damage it does.

I had the infusion a couple of days ago. It took 3 hours flat. I felt like crap that evening but we'll enough the next day for yoga. The day after that I did intervals on the bike but turned in times about 10% slower than usual. That's OK, I'll take it over more MS damage. I'm going to talk to my neurologist about just going on a 9 month schedule. This stuff seems to work for me and to the extent I can avoid further MS damage, for the time being anyway, I'm willing to risk secondary complications.

Thanks Dave and Alain, I hope this works as well for you guys too.

Larry

[penkalet]

Great news and I am happy for you guys. I am starting Ocrevus next month so will see if it work as well.

[ActiveMSers]

Larry, this goes without saying, but this is fantastic news. I hope for the same results!

[AMFADVENTURES]

I'm going on 9 1/2 months since my last rituxan infusion now and blood tests indicate my B cells still have not regenerated! Even if the blood tests are not completely accurate, I believe this to be largely true because I have yet to feel the MS progression gnawing at me like I did prior to starting the rituxan therapy.

[AMFADVENTURES]

On the Rituximab front, it's been 8.5 months since my last infusion. I contacted my neuro about getting another infusion because I'd been feeling a little MS'y lately. He sent me in for a blood test which came back indicating my B cells still totally depleted. As it turned out, by the time the blood test came back I was feeling quite a bit better. Apparently the MS'y feeling was a pseudo exacerbation probably brought on by an absessed tooth which I've since had taken care of.

Hope the Rituxan is working for you Dave.

[ActiveMSers]

I talked to my neuro about this, and he is a pretty smart dude and leading researcher. He said the two are essentially the same drug, only Ocrevus might have fewer allergic reactions since it is humanized. I didn't have any issues with my second infusion, so we might stay on Rituxan. It's cheaper for the insurance company, too, although Ocrevus is aggressively priced.

[MSLazarus]

Go to wheelchair kamakazee? site...

He has a very good analysis of the difference between rituximab and ocrelizumab.

If you can not find it I will find the link for you.

[Suebee]

MSLazurus,
Thank you for posting info about off Label rituximab vs. FDA approved cousin. Issues with FDA approval and BIG Pharm greed is, so disheartening.
But I think, proof is in the data, and scientists have tried to justify rituximab's off label use in MS. Here is link to I what think is the most recent largest retro-study of MS patients on rituximab, demonstrating safe and effective for MS patients.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5109942/

I post awhile back about the Cleveland Clinic's use of Rixtuximab off label for MS. The Clinic has kept it's information flyer about using it for MS on its website. Here is link https://my.clevelandclinic.org/ccf/m...heet.pdf?la=en
One quiver in our arsenal against MS and big pharma & insurers' greed.....
Good luck.

[MSLazarus]

Rituximab vs. ocrelizumab

Rituximab is Ocrelizumab
This is an article I copied. I am not the person writing it but it echoes what my doc said to me 2 years ago. My insurances pay for rituxan infusions but the cost at the infusion center is about $35,000.00. Every 6 months.


"The patent on Rituximab expired in the US in 2015. Basically when they were doing the clinical trials with multiple sclerosis by the time they were up to phase III the patent would have expired.

No patent=no profit.

So Genetech started inventing a new drug. The biggest difference is that Rituximab is a chimeric antibody, a genetically engineered antibody. Ocrelizumab is a humanized antibody, antibodies from non-human species, whose protein sequences have been modified to be similar to those found naturally in humans. Otherwise Ocrelizumab is basically the child to Rituximab. Being that Ocrelizumab is humanized antibody, the hope was improved safety and reduced infusion reactions. What actually happened is it turned out that Ocrelizumab was LESS safe. In 2010 trials on Ocrelizumab for Lupus and Rheumatoid Arthritis had to be abandoned because of an unacceptable number of serious and sometimes fatal infections. Ocrelizumab is almost identical to that of Rituximab (except for the way the antibodies are created, chimeric versus humanized) which has been used for decades to treat cancers of the blood and for 7-8 years off label basis for treating multiple sclerosis. Rituximab is pretty safe, a good drug therapy, and has a large data history and experience. It isn’t cleared for multiple sclerosis use because of pharmaceutical profit lines not seeing it to the phase III clinical trial. Therefore some insurance companies will DENY the use of the safer Rituximab but approve the still to see Ocrelizumab when it actually is released. THEY ARE BASICALLY THE SAME DRUG. However FDA can’t approve Rituximab for multiple sclerosis without phase III. No phase III because of $$$$$$$$$$. We the patients are left with the choice what do we do, what can we do?

I was denied by my insurance for Rituximab and denied 2 appeals and even took the appeal to the state level and was denied (I have state insurance). I finally got into the patient assistance program from Genetech and am able to receive Rituximab (pays to be poor). However this was also because Ocrelizumab was not out yet. It was supposed to be released January 2017 but was once again push back. There is a very good possible I may have to go to the Ocrelizumab which my insurance would pick up, because it was FDA approved for multiple sclerosis, but if prefer to stay with Rituximab. I’d rather be on a drug that there is a well known history on, not one pulled from the shelf many times. Anyway just wanted the truth out there, I’m tired of seeing these promised articles everywhere when this drug really isn’t “NEW”."

[AMFADVENTURES]

Hmmmmm, well, of course you're absolutely right Linda, the antibiotics were a big hmmmm factor. Nevertheless it might be something to keep an eye out for. After all, a number of the current MS therapies were discovered serendipitously! And there are studies around that have indicated positive outcomes using antibiotics on MS. Personally, I am anxiously awaiting this year's ECTRIMS conference and will be particularly tuned into studies involving antibiotics.

On another note, in an earlier post I questioned the ommision of Rituximab on the new NMSS web site. Well I am happy to report NMSS is off my sh*t list now. They have updated the Web site to include a number of off label medications for people with MS, including Rituxan. They also revised and expanded their position on medical Marijuana. Kudos NMSS. If you'd like to see the revisions, they are here:
Rituxan http://www.nationalmssociety.org/Tre...r-MS-off-label
Marijuana http://www.nationalmssociety.org/Tre...ines/Marijuana
Larry