advice on what next !

[Geordieland]

Good morning ! I have an appointment with my RA consultant on the 31st Jan and I would like advice as to what “ could “ be offered as I have crashed and burned on Methotrexate , Sulfasalazine and Leflunomide 😳 ! I’m also taking 5mgs daily for Polymyalgia Rheumatica and have osteoporosis . Apart from that I’m well 😂 ! At my last visit when I was given Leflunamide , my Consultant said “ if this doesn’t work we’re stuck “ I’m sure that’s not the case and would like advice as to what I might have “suggest” at the meeting ?? Many thanks x

[Soundofmusic52]

how long was you on methotrexate?

[Geordieland in reply to Soundofmusic52]

10 weeks and it sent my liver numbers sky high as well as making me feel sick 😞

[helixhelix]

Ask whether they would consider you for biologics

[Geordieland in reply to helixhelix]

am presuming these are more expensive ? X

[helixhelix in reply to Geordieland]

yes, around £800 - 1000 a month. But they are approved to be presxribed for people with moderate to severe RA who have failed on the basic DMARDS.

[Geordieland in reply to helixhelix]

Ahhhh 😔 We’ll it looks like I’ll be at the mercy of the finance gods then 😩 Watch this space 🤞 Thank you for taking the time to reply x

[Runrig01]

If you have failed DMARDs you may be eligible for biologics. You need to show you have persistent disease activity and have a DAS score of >5.1.

If you do your rheumatologist will apply for funding and run blood tests and X-rays to ensure you don’t have latent TB among other things. It’s usually a slow process and can take 7-8 weeks from the initial discussion, to the nurse coming out to show you how to do your injections. I would have a read of the booklets available on NRAS re Biologics so you can have an informed discussion about them. Good luck 🤞

[Geordieland in reply to Runrig01]

Thank you ! That’s really useful information ☺️ Will definitely do my research x

[oldtimer2]

Have a look at the treatment pages on the NRAS website. That will give you the best idea of what's available and what questions to ask at your appointment.

[Geordieland in reply to oldtimer2]

thanks 👍 will do x

[Blodynhaul]

Hi Geordie, sorry about your issues. I was on methotrexate (MTX) for many years - and the last few years had a lot of sickness & liver issues too, but it took a while for them to offer Leflunamide (LEF), but that worked a treat for about 7 years, until it stopped working in about Jan 2021 for some reason. My RA got totally out of control & I was totally debilitated out of action in agony all over for the whole year 2021. The Rheumy first told me to carry on with the LEF to see if started working again - but I just got worse. Then in June 2021 I was put on a Biologic (Adalimumab) for which I had very high hopes, but it didn't work & I got even worse. They usually try you for 3 months on a biologic as it can take that long to properly kick in. But no luck after 3 months. Wisely, the Rheumy then did a blood test to see if I was producing antibodies against the Biologic - & I was. So it then took till Dec 2021 to go onto the 'last resort' group of drugs - JAK-inhibitors - & I started on the brand newly approved one Filgotinib (FIL) in Dec 2021. A year on it's been doing a great job with controlling the inflammation & pain (though some not good chronic effects), though I do wish I hadn't had to go thru such a terrible year with nothing working, as it seems to have permanently affected me. But I suppose the Rheumy has to wait & see & not just quickly jump around lots of different treatments. There are lots of Biologics & JAKs, so there should be many options for you in things don't work! GOOD LUCK!

[Geordieland in reply to Blodynhaul]

wow !!! You’ve definitely been through it 😳 ! Really not sure what ( if anything ) they’ll offer but am hoping they’ll offer me something 🤞 Will post again after my appt Hope you continue to keep your inflammation under control ☺️

[Blodynhaul in reply to Geordieland]

Thanks Geordie, hope all goes well for you &things work out!