Rituximab not working at all after 3 months

[ma73jon]

Hello everyone,

I have aggressive rheumatoid arthritis for 10 years. The only treatment that worked well for this was tofacitinib, but unfortunately it caused me massive multiple blood clots in the lungs and had to be stopped.

The blood clots have gone away and I was switched to rituximab. I took the second infusion on May 27th., 2021. It is now 26th August but unfortunately it has had no effect at all and I am in pain. At a recent telephone appointment my consultant said she wants to continue with the rituximab even though it has not been effective so far as she says that it sometimes only works on the second or third dose. The second dose will be in November about 3 months away.

Patient leaflets on the internet seem to imply that if it was going to work it should be working by now e.g. versus arthritis says "If rituximab works for you, you'll probably start to feel some improvement after around six weeks."

Gateshead NHS trust say "Rituximab will work within 3 months if it is going to work at all. " qegateshead.nhs.uk/sites/de...

My question is do any of you have the experience of rituximab not working at all for 3 months or longer and then starting to be effective after that?

If so, then this might give me a bit of hope as I am in pain and this treatment is definitely not working at all for a long time.

Thanks to all of you.

[Lolabridge]

I'm sorry I can't remember when my first cycle of infusions started to work but it may have been at around the 12-16 weeks mark. If you've been off all meds for a while it may be that your RA problems have built up in that time so perhaps its will be another couple of weeks for you. Perhaps like me you had to be taken off Methotrexate because of lung problems so it will be harder for you, as it was for me.Your consultant is right in that each cycle of infusions has a cumulative effect. For me it works really well now ( I had my 4th cycle in May).

I really hope you find the Rituximab kicks in soon for you and I can assure you when it does, you will really notice the difference. Let us know how it goes for you.

[ma73jon in reply to Lolabridge]

Thank you so much Lolabridge. That gives me some hope that it will kick in soon.

[AgedCrone]

I’d listen to your Rheumatologist if I were you ….not rely on sites like Versus Arthritis…….they just give average times that drugs might work. Rtx can indeed take until the second set of infusions for some to really feel the effects.

Your doctor knows you and she knows why she put you on Rituximab and so she must thinks it is likely to work ….I’d ask for some extra painkillers and sit it out until your November infusion…. If you say how poorly you are feeling she might even bring it forward a couple of weeks.

I have been on it now since 2016 and it honestly is the best RA drug I have had in 20+ years.

Neither DMards nor Biologic drugs act quickly on everybody…& both take different times to work on each person.

Fingers crossed your next infusion will kick the Rtx into action.

[ma73jon in reply to AgedCrone]

Thanks AgedCrone it's really useful to have the benefit of your experience

[AgedCrone in reply to ma73jon]

Yep….I’ve been there, done that & I’m still standing.We just have to believe that eventually we will be in a good place…otherwise why bother?

Good Luck..spoil yourself & think positive!

[cozzycoz]

Hi, I’m on my 8th round of Rituximab it’s the best when it kicks in although my last infusion was delayed (COVID) so it took at least 3mth for me to feel the benefits this time, stick with it take other painkillers if needed in meantime & hopefully you will see the results soon, I also take methotrexate injections ( 🤢)

[Evie3]

My Consultant put me on steroid pulse therapy for 3 days…..going to the infusion unit for an hour each day. That got my inflammation right down giving the Rituximab a chance to work…which it did. I couldnt cole with the pain and was in a wheelchair…which is now in the garage 🤞

[Jimminey]

I had my first and second infusions of Rituximab on 10th and 24th May this year. I also take Sulfasalazine and Mtx. My inflammation started to decline about 3 weeks ago. It came back and then went down again after my weekly dose of Mtx twice. I still have inflammation, pain and fatigue/tiredness, but something does seem to be happening to the inflammation at last after about 3 months. My rheumy said 2 weeks ago that Rituximab can take 3 months or longer to take effect.

I hope this is helpful to you. I am still wondering about the effects of Rituximab myself and will just see how things go until my next rheumy telephone appointment in November. I hope yours kicks in!

[ma73jon]

Thanks to all of you for your very helpful comments. The more I know the more in control I feel so thanks once again

[charisma]

Hi ma73jon

My first round of RTX infusions was Dec 2029; a lifting of symptoms gave slight relief after 15 weeks but lasted only 4 weeks.

Second round, noticeable difference within days. Then two months of feeling almost normal but still with sudden fatigue and some tender joints but very low pain.

So hang in there… I had low dose Prednisolone also to tide me over. Good luck.

[ma73jon in reply to charisma]

Thanks so much. It does help me hang in there as it gives me hope that eventually it will start to work because at 13 weeks it still has absolutely no effect. I'm on 14 mg of prednisolone daily

[Rafandready70]

I had my second infusion (first cycle) of rituximab on 26 April and I’ve only noticed an improvement in the last two weeks, hang in there, hopefully your improvement is just around the corner. I’ve also been on 5mg prednisolone daily but feel like I can start reducing that now. Hope you start feeling better soon 🤗

[ma73jon in reply to Rafandready70]

Thanks for sharing your experience and I continue to hang on in there.

[Moomin8]

Hi, I'm the same as you tbh. Only had my first round of Rituximab at a very similar time and no positive effects yet 🤷🏻‍♀️I also have 22.5mg Methotrexate (via injection: Metoject) and Sulfasalazine. I'm really struggling to be perfectly honest, but my RA has been awful for a very long time.

[ma73jon in reply to Moomin8]

I feel for you and let's hope the rituximab kicks in for both of us soon