Rituximab 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.

[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.

[ActiveMSers]

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

[penkalet]

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

[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

[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.

[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

[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

[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]

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

[AMFADVENTURES]

I did another Rituxan infusion yesterday, they get easier and easier. This one took 2 hours, the only side effect was a slightly fluish feeling yesterday evening. Felt fine today! I think the fact that these things get easier and have less short term side effect is because the target B cells stay pretty much obliterated, hence very little new damage for your body to contend with.

I tried to push the one before this one out to 9 months and ended up with an MS flair before I got the Rituxan. Now I'm just going with an infusion every six months. It's not worth the damage a flair causes if you're secondary progressive. Good stuff if it works for you!

Larry

[MSLazarus]

Good report

I tried pushing infusion to 8 months and suffered a flair as you did. That was a couple of years ago. Now I have been asking if infusions could come every 3 months instead of every 6. I was not thinking of asking for an increase in dose but just wondered if anyone has tried a more constant infusion schedule to help prevent the month long slowdown I have before each infusion.

Does anyone do infusions on a different schedule than the protocol of 6 months?

I got an infusion yesterday and the positive impact is even more dramatic than usual. I have been walking steadily today whereas yesterday one leg was really dragging. I’ll have to go dancing!

[AMFADVENTURES]

I haven't heard of anyone getting a Rituxan infusion for MS any more often than every six months. I think people with RA can get it as often as monthly but I don't know the usual dossage. One guy I know does get a higher dose than the standard 500 MG, something you might ask your Neuro about.

Might be interesting to see if Ocrevus worked longer for you. Seems I heard somewhere that the body can overcome Rituxans toxicity easier than Ocrevus's, an advantage of Ocrevus, but I really don't know.

[MSLazarus]

Thanks AMFADVENTURES

Ocrevus is the med that my neuro has waiting in the wings..if rituxan stops working he believes we should give it a try. Since they are virtually identical I am not sure why but I am an adventurous patient🙀

I will ask about dosing. Thanks

[AMFADVENTURES]

Well, I'm only slightly delinquent in posting this. I did another Rituxan infusion last Monday and again, was kind of a ditz the rest of the day post infusion. Mondays are the day I take care of business. I paid the bills, sealed and stamped the envelopes, put them in the trash and went to the post office to mail them and wondered what the hell happened when I figured out I didn't have them. It took me a half hour to finally find them in the trash back at home and I had NO recollection of how they got there??? I don't normally experience this kind of short term memory problem except on Rituxan infusion day. Just an FYI.

Last time I did an infusion I didn't feel very good the day after but this time I was just fine although I did take it easy. On Wednesday I went for an easy bike ride followed by a baseball game in excruciating heat, walked at least two miles that day and didn't really experience any extraordinary problems with any of it! I got to say, this therapy has got to be about as easy as it gets.

This one was a tabout 7.5 months after my last one. After I had the "Ageing MSer and potential discontinuation of therapy" talk with my Neuro, which I declined, he called me to persuade me to go to an 8 month infusion schedule because of a gut infection I got shortly after I started Rituxan and because blood tests at 6 months indicated that my B cells had not begun to regenerate. No problem, although I suspect B cells might not be the only thing Rituxan is affecting!

Anyway, this therapy seems to be working pretty well. I suspect most of the problems I continue to have are due to the effects of age on an already compromised neural system and although that's not pretty, I continue to believe that the Rituxan is effectively keeping the MS at bay. I wish it had been brought to my attention at least several years earlier, I might have saved a few more neurons!

Later,

Larry