rituximab

[MartinJM]

how long do people find that it takes to feel significantly better after rituximab infusion. It is now 6 weeks since my first infusion and I’m not feeling any better yet. My wrist is so painful I can’t do much at all which is very frustrating.

[3LittleBirds2]

Hi Martin

If you pop Rituximab into the search posts box you will find many posts about Rituximab.

My first round of Rituximab took a few weeks to kick in and then I only had a short period of feeling like it was working before I needed an another cycle. Further infusions were quicker to work and I had 7 great years on Ritux, sadly I've been taken off it now but I will miss the convenience of it,infusions maybe once/twice a year then done until it's needed again plus of course the benefits.

I really hope it kicks in for you soon and that you feel the benefits too..but maybe contact your Medical team for further advice.

[MartinJM in reply to 3LittleBirds2]

Thanks

[emmajj1971]

I found that the effects of rituximab took sum time to improve my symptoms but after 3 rounds of infusions (which was 18 months) I felt so much better.

[MartinJM in reply to emmajj1971]

Thanks

[bpeal1]

From memory my first round took about 12 weeks to kick in. I remember one day suddenly realising that everything moved much more easily and I was in less pain.

Subsequent cycles the improvement is usually more subtle. I gradually start improving a couple of weeks after the infusions.

[MartinJM in reply to bpeal1]

Thanks

[janmary]

I also found over 3 months before much improvement after first infusions- full effect a month after second which kept on improving over 3 rd . Worth the wait, so hopefully good for you too!

[MartinJM in reply to janmary]

Thanks

[AgedCrone]

I think most people need to wait until at least until after the second or even third set of infusions to feel the full benefit of Rtx….although some lucky people do feel the effect immediately..

I have been on it now since 2016 …having been diagnosed in the late 1990s, and it really is the best & most convenient RA treatment. I now can go between 9 & 12 months between infusions, and I only need a single infusion.

So unless the side-effects are unbearable,don’t give up too soon. It really is worth waiting it out to have no pain, no oral drugs, only a few blood tests, and only to have to go to the hospital once a year for the infusion .

[MartinJM in reply to AgedCrone]

Thanks

[Maxadolf]

Based on close observation of a close friend and following the effects of each infusion, her experience was somewhat akin to the pleasure of interrupting a constant wall,head-banging session immediately following the first of six infusions over 18 weeks. At the time she was on a planned 6 -every 3 week sessions of chemotherapy for Non-Hodgkinson, Follicular Lymphoma: second time round after 4 years of remission. This time she was on POLA-BR which is a combination of Polatuzumab vedotin, Bendamustine (aka Levact) and Rituximab.

The first infusion created major blood-clotting on the lungs which resulted in emergency hospitalisation and a halving of subsequent doses of the Bendamustine and, once diagnosed, immediate daily treatment with a blood thinner. So, it’s not possible to point the finger at Rituximab as the cause of the discomfort following infusions.

However, the first infusion produced extreme discomfort that included nausea. Thereafter, the infusions no longer produced the intense discomfort following the very first infusion. All cancer cells had been removed following the half-way (3rd) infusion. The patient continues to receive the daily blood thinner as tablets (2x2.5mg Apixaban) even though her chemo treatment is ended and is likely to continue for another 2 months in the hope of eliminating the blood clots generated by the Bendamustine.

[MartinJM in reply to Maxadolf]

Thanks

[AgedCrone in reply to Maxadolf]

I am sorry your friend is having such a bad but she was not on Rituximab infusions for RA…..but for Cancer….which is a complete different situation. ..it cannot be compared.

A few RA patients do experience some mildly unpleasant side effects during their first Rtx infusion…but this usually passes & they continue with a successful second infusion 2 weeks later. In fact some rheumatologists now do start patients on just one infusion every 6 months.

Plus your friend’s Rtx dosage could have been possibly as much as ten times higher than the dose given for RA…as would the frequency.

For RA …except in very exceptional circumstances we always have at least 6 months between sets of infusions…& the dose for RA is far less toxic than the high doses needed for cancer. I don’t think the high dose given for cancer would ever be given for RA.

If Rtx does not suit a person with RA , a different Biologic is usually offered, the Rtx dose is not just increased.

If you read back through this site, you will see there are many people …myself included …..who are very satisfied with their experience on Rtx…but it does take different people different lengths of time before we can say those magic words “It’s Working”!

[Durrell in reply to AgedCrone]

Thank you AgedCrone so much for very knowledgeable post. I am going to start Rtx on the 10th of June & the above post causes great concern, so to read your well thought out post is very comforting. The RA nurse said like you most people tolerate it very well. I’ve been a long time with little or no RA treatment & so want to get the RA under control. Thank you for taking the time out to put it right, I’m sure others like me will find this a great comfort, we naturally get twitchy when starting a new drug. 🙏🏻🌸

[Maxadolf]

Fair point!