Methetrexate and rituximab: I haven't been on in ages... - NRAS

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Methetrexate and rituximab

mille profile image
17 Replies

I haven't been on in ages and wondering if anyone is on rituximab without methetrexate. I never ever felt methetrexate helped me even when I was on a high dose. Now I am on rituximab and I have been told I must take mtx along with it or else I will have to come off it. Surely this would be unfair, I feel I am being made to take a toxic drug that didn't help me in the past so why would it now.

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mille profile image
mille
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17 Replies
AgedCrone profile image
AgedCrone

I have been on Rituximab without Mtx since 2016 ......I refused point blank to take Mtx again even though I had taken it successfully for 7 years, but when it went rogue on me the effect was on my central nervous system so I wonder if when your rheumatologist applies for funding there must be certain conditions that allow mono-therapy with RTX to be approved?

mille profile image
mille in reply to AgedCrone

Hi, Yes, it seems to be a condition of getting the rituximab here in the UK, I just hate mtx and it didn't help me when I was on it without the rituximab and I was told they would have to stop rituximab if I didn't take it. Thanks for your reply. x

bpeal1 profile image
bpeal1

I’m also on rituximab without MXT. MXT did nothing for me and and I suffered badly with side effects. When I started rituximab no one ever mentioned starting MXT again. I do still take Leflunomide.

mille profile image
mille in reply to bpeal1

I am im in the UK Bpeal and it seems to be a condition that you are given mtx if they fund the rituximab for you. Thank you for your reply.

bpeal1 profile image
bpeal1 in reply to mille

So am I! :)

Artroc56 profile image
Artroc56

It is common practise to take a dmard along with a biological. The dmard is there to reduce the likelihood of your body creating antibodies to the biological which would render it ineffective.

weathervane profile image
weathervane

Hi mille , i have Sjögrens, i have never been on Mtx and i have been receiving rituximab infusions for 2 years with great success. I hope you are able to get a treatment regimen that suits you , best wishes 🌸

mille profile image
mille

Thank you for your reply. I have been on rituximab for a while now and it has helped me a lot. Hope it continues to help you for a long long time. x

Lorraine_NRAS profile image
Lorraine_NRAS

Hi

I have been looking to see what the guidance is for RTX and on this link link.springer.com/article/1... - there is the following statement

Although rituximab is approved in combination with MTX, rituximab was used as monotherapy in the original phase 2 trial, and the response was superior to placebo for ACR20 responses but not for higher-level responses. A later study also found rituximab monotherapy to be efficacious, but the authors concluded that it should only be used for selected patients [19]. A large registry review found that rituximab combined with MTX or leflunomide was superior to rituximab monotherapy, although another registry found monotherapy to be reasonably efficacious [18, 20]. Rituximab monotherapy is therefore not usually recommended except for exceptional circumstances.

in reply to Lorraine_NRAS

That's odd Lorraine, I have RA and Vasculitis. I was on Leflunomide with MTX (25 mg) for RA before the Vasculitis diagnosis. But had the MTX stopped due to Liver Function being elevated. After Vasc came along, rheumy put me back on MTX (7mg) with Rituximab (now changed to the bio-similar Truxima). This is for Vasc, along with Pred, but I'm still on Leflunomide for RA!!

mille profile image
mille in reply to Lorraine_NRAS

thank you for that information x

farm123 profile image
farm123

I am in the UK. My body does not like MTX having tried twice. My consultant did give me one cycle of Ritux without MTX but it never did anything for me.

Nanapapa6 profile image
Nanapapa6

i am on rituximab but not on methotrexate , i went off methotrexate about a year ago as i was i’ll all the time so i was put on sulphsalazine instead

mille profile image
mille in reply to Nanapapa6

I also take sulphasalazine and plaquenil and told if i don't take mtx then they will have to stop the rituximab and it is the only thing that has helped me. I am tempted to just say I am taking it although i don't like to lie. x

philvaughan profile image
philvaughan

I had rtx without mtx in uk in 2015

mille profile image
mille in reply to philvaughan

Do you still take rituximab, Phil? and did they not say you had to take it?

philvaughan profile image
philvaughan

its been left open to me I agreed if they would give it to me at the royal Brompton they said I would have to have it at Maidstone

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