Help with drug choice please - rituximab or methotrexate?

[Melba1]

Hi,

I’ve been told to think about next treatment which my (lovely!) rheumy says I need to start now. I think his preference is rituximab (but he’s very clever and has learnt with me that I need to feel it’s my choice!) but has also said methotrexate. I have ‘failed’ on MMF and azathoprine. Had a big neurolupus flare 9 months ago, trying to decrease steroids but reflare once I get below 12.5mg.

Has anyone got any advice as to which to go for please or anyone had a hypersensitivy reaction to MMF/ AZA then been ok with methotrexate or rituximab?

Although I’m quite excited that the rituximab could make a massive difference I’m also a bit worried I could have a bad reaction (I react to so many things since lupus and have an epipen now).

Any experience/ advice appreciated please!

[Ianrussell69]

Hi I think being ok on methatrexate is a loose term I been taken off methatrexate for a 12 month break and Ican now tell simptoms are coming back all I can say is the tablet is evil took them for 12 month on a Friday morning and spent Saturday in bed or on sofa Sunday was better Monday normally ok but if you choose methatrexate please push for the injections as when I started these I had almost no side effects it was just I got a bad infection this yr and sepcis last yr as it dose reduce your immune system however it is not certain if the methatrexate contributed to the sepcis or infection But I did feal better on it go on YouTube there are a couple off people whohave blogged there experience on methatrexate

[juliaselsey in reply to Ianrussell69]

Yes I echo this. It wipes out a day..but injections are way better than orally.

[Melba1 in reply to Ianrussell69]

Thanks very much- very useful advice. What was your dose please?

[Ianrussell69 in reply to Melba1]

20mil once a week

[Pickzie]

I have found taking weekly methotrexate tablets fine- no nausea or other side effects - although you can take it by injection if you don’t tolerate the tablets. It did make a positive difference but it does take up to 12 weeks to reach optimum levels and you will need regular blood tests, but that’s probably no diffferent to azathioprune. For me, the methotrexate didn’t quite control my symptoms so I have been having rituximab too for the last 3 years. FANTASTIC! I was very worried about taking rituximab but it’s made a real difference. I haven’t had any side effects to the infusion and now go 9 months between treatments. Some people need 6monthly infusions, others can last anything up to 2 years.

[Melba1 in reply to Pickzie]

That’s great to hear! Thanks very much and glad it’s made a big difference to you. Feel quite nervous but also excited that it could improve things so much

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