Rituximab: Hallo, is anyone out there on Rituximab, or... - NRAS

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Rituximab

Hope164 profile image
13 Replies

Hallo, is anyone out there on Rituximab, or know how successful or not. I’m currently on Methotrexate 25 strength and am concerned

Thanks

Liz 💕

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Hope164 profile image
Hope164
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13 Replies
AgedCrone profile image
AgedCrone

Been on Rtx very successfully since 2016…last infusion January 2022…did not kick in…I’m convinced because it was only six weeks post a Covid vaccination.I was previously on 25 mg oral methotrexate for seven years – that just stopped working overnight……& symptoms started drifting back.

Neither my Rheumatologist nor my haematologist will commit to commenting yea or nay this might be the reason.

I am seeing my Rheumatologist quite soon and I’ve got a list of questions as long as my arm….. which is very unusual for me……after 6 years on what has been a really successful drug I have been lulled into thinking I was set for life.

I really really don’t want to stop Rtx, but if it’s not going to work and the symptoms I’m getting now…which are carbon copies of pre Rtx days.,l need to know where I’m going from here.

But if you were offered it …..your Rheumatologist obviously thinks your clinical condition demands it - so I would definitely recommend you accept it .

bpeal1 profile image
bpeal1 in reply toAgedCrone

Just a thought and may not be applicable but did they change the brand (biosimilar) of Rituximab? I tried a different one once and it didn’t work at all. My rheumatologist now insists I have the Mabthera brand and it works well. It’s a bit of a pain though as the hospital pharmacy has to order it in especially for me and several times I’ve arrived for my infusion to be told it hasn’t arrived yet or they forgot to order it.

AgedCrone profile image
AgedCrone in reply tobpeal1

Yes about two years ago various health authorities did write telling people they were changing from Mabthera to a Biosimilar, but my hospital gave us the choice of speaking to our rheumatologist & the rheumatology pharmacist … and I was allowed to remain on Mabthera.Some people seem quite happy & do well on a Biosimilar but I had had such a trek over many years to try to get something that suited me I was very reluctant to swap.

bpeal1 profile image
bpeal1 in reply toAgedCrone

My rheumatologist said that the biosimilars have to work for exactly the same percentage of people as the original but that there was anecdotal evidence that it wasn’t necessarily the same people (I don’t know figures but just as an example you could be in the 80% Mabthera works for but the 20% the biosimilar doesn’t work for). I was very happy to try the biosimilar as I’m all for the NHS saving money but unfortunately it didn’t work for me.

AgedCrone profile image
AgedCrone in reply tobpeal1

That explanation sounds reasonable… many people did complain at first especially when they were given no choice….they mostly cited they were being discriminated agains on cost grounds….but far fewer seem to complain now. If I have to change qué será será…….just hope rheumy has all test results back& decides to give Mabthera another go.

bpeal1 profile image
bpeal1

Unfortunately as we with all Rheumatology drugs what works for one person may not work for the next so difficult to say how successful it will be for you. However, it has worked well for me.

Lolabridge profile image
Lolabridge

Yes I’m really glad to be back on Rituximab again now (after trying Adalimumab which didn’t work for me). It’s the biosimilar Rixathon that I’ve been given and I’ve had Truxima in the past which is another Rituximab biosimilar.

It works really well for me whereas the two anti-TNF drugs I’ve tried do not and I had bad reactions to all the usual non-biologic DMARDS.

I hope it works just as well for you as it does for me. Good luck 🤞🏻

StormySeas profile image
StormySeas

Yes I've been on it a few years and it's been very successful. The improvement wasn't immediate but it lead to a gradual improvement of symptoms and my MTX was reduced to a low dose.

Hope it works for you too.

cathie profile image
cathie

I've also responded well to Rituximab over several years. But different people have varying experiences so its hard to extrapolate from others experiences. Not had any fearsome side effects and am well monitored though.

Nik8210 profile image
Nik8210

RTX works for me tho it took a few cycles to see the proper results… so get a little mini boost from the steroids as well

Grayling profile image
Grayling

Do as your Rhumy nurse or Doctor has told you how to use it, and all should be ok. Above all don't drink booze while on MTX, and all should be ok, if in any doubt ring them up and have a word with them,Good luck

Angels54 profile image
Angels54

Hi ,I had infusion it didn’t work for me , 🤞

Hisue profile image
Hisue

I had the first 7 hr infusion of Rituxan & was consequently bedridden with horrendous pain, & fatigue for 6 months. I thought I was dying. Dr couldn’t prescribe another rheumy med for 6 mths until depleted WBCs replaced themselves. Now I am afraid of infusions & take Rinvoq.

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