starting RTX

[janmary]

I am starting infusions in 4 weeks time. Currently on Benepali having had to stop MTX (after 10 years.

My rheum nurses are great but currently giving conflicting advice - do I stop Benepali now or when only when infusions start?

Bit scared of going without any treatment after a massive flare recently….

What have others been advised?

[Lolabridge]

Hi Janmary

I don't think any of us would feel that we can answer that question so please contact your consultant for proper advice.

Good luck with the RTX - I'm on it and it works really well for me.

[janmary in reply to Lolabridge]

thankyou for responding

[GranAmie]

As Lolabridge says, ask your rheumy consultant, it has been superb for me after MTX wasn't. The only prob for me was understanding when to take and when to hold off infusions in relation to Pfizer and flu vaccs. Best of luck to you

[janmary in reply to GranAmie]

thankyou for your response. Glad it worked well for you

[Neonkittie17]

I wouldn’t like to give advice and the rheumy/nurse usually makes this clear re a “wash-out” of the current med before starting another. In other words, I’ve no idea! Sorry. From my own experience I’d not had a biologic for six weeks before I started Rtx as it took six weeks to organise it so I didn’t have your situation. Rtx served me very well since 2014 and worked within a month and took my CRP down to <5 where it has stayed since 2014 and gave me excellent mobility and zero RA pain. I stopped Rtx last year due to persistent side effects the last four years but none of those affected the efficacy of Rtx on RA. Hoping it gives you as much mobility and stops the RA disease element of RA as it did for me. The need to plan vaccines around Rtx is difficult at times so be aware of that. Good luck.

[janmary in reply to Neonkittie17]

Thankyou - wasn’t really asking advice- just other peoples experience - so far 2 specialist nurses, 2 doctors, 4 opinions!!

Will take my usual approach of adding it all up and going down the midline!

Thanks again - hopefully it will work as well for me as ot did for you!

[Lolabridge in reply to janmary]

Please do contact your consultant rheumatologist to get the best advice, preferably not a GP or nurse.

[Neonkittie17]

That’s all we should ever do really. Say our experiences. What worked well for us etc Would be good if all the medical peole said the same thing to you! Sometimes too many opinions are not always so helpful. My 7 week pause was enforced by lack of an available day in the infusions clinic. I hope you can start Rtx sooner rather than later. 🤞🏻

[cropredy]

Hi Janmary,

I am waiting to hear from my RA department because I am due to start infusions because I cant take methotrexate and Erelzi and Imraldi did not work, my inflammation and ESR were also high and I was continually in pain. Good luck with yours when you have them.

Take care

Ray

[janmary in reply to cropredy]

thankyou and hope it works well for you

[Bhasvic64]

Hi there i only have experience of mtx sorry.

[jocascanet]

I was under the impression that you can't take two of the biologics at the same time.

I had been on methotrexate for six years when I developed a necrotic infection in radiated breast tissue. It took 10 months to heal. So don't feel too bad about stopping MTX.

[Bernijpalmer]

My understanding is that benepali is added in when methotrexate is inadequate on it's own.

[Suzy95]

Hi I have only been prescribed Methotrexate and hate the side effects.I think you should try to see or contact your Rheumatologist for an explanation for stopping methotrexate and discuss your concerns about starting a new drug. Hope you will feel a lot better

[Ruby2002]

I started Rituximab in August and had been on Infliximab. I was told I’d be switching in May and to stop Infliximab immediately to allow time for it to clear out of my system before starting the Rituximab. As Benepali is also an anti TNF I suspect you should stop before beginning RTX, I’m sure I’ve read that somewhere but I read so much before starting I’m not sure where! My Rheum gave me a steroid injection to get me through to the infusion without having a flare.

Have you also been advised to have a Covid booster? My Rheum wouldn’t let me have the infusion until I had one a minimum of four weeks before the infusion as RTX kills the B cells which makes you more susceptible to infection. Apparently it also blunts the immune response to the jab do it’s even more important to have an up to date Covid jab.

Good luck with RTX, I found the infusions a breeze but haven’t yet seen much improvement, my son tells me I need to be patient!

[janmary in reply to Ruby2002]

Thankyou / hope you see an improvement soon. I had a Covid booster 2 weeks ago and was told that there needs to be at least 4 weeks before that and starting RTX

[Knitmare]

Like others have said, I think you need to discuss this with your consultant as only they can give you sound advice.