leflunomide query

[Tealblue2]

hello all

I was put on leflunomide at the beginning of November. A week after I started I had a bad flare. But after that my symptoms improved some. It was increased last Friday. Since then I have also been struggling with a flare. But I have also today got the most awful low mood. I know life is complicated- but this is beyond that and so quick. I had the same thing happen when I was on methotrexate and I’m just concerned I could end up down the same rabbit hole.

I don’t want it to become a case of choosing between good mental health or being in pain all the time.

has anyone else experienced this please?

[Madmusiclover]

Yes! Let your rheumy know. You’ve barely scratched the surface of available drugs. One of them will work for you. Don’t despair.

[Tealblue2 in reply to Madmusiclover]

Thank you.

I’m running out of dmards though, as that’s methotrexate, salphoza (I can’t spell that one) and leflunomide.

I’m speaking to them next week as they are changing me from Yuflyma, as that’s making me sick and not working, even though I’m on double the dose. Guess it’s back to the drawing board.

Thank you. I just needed someone else’s experience so that I could get through this week

[Madmusiclover in reply to Tealblue2]

I got through the 4 DMARDS in relatively quick succession. Now on drug no 9. Don’t worry. Plenty more to go at. X

[Tealblue2 in reply to Madmusiclover]

Thank you!

But my understanding is that you need to have a dmard with the biologic to work…..

[aliplayspiano in reply to Tealblue2]

Not necessarily. I have been on a biologic for last 7 years and don’t take any of the DMards with it.

[Tealblue2 in reply to aliplayspiano]

Thank you. By interest do you mind me asking which biologic you are on?

[aliplayspiano in reply to Tealblue2]

I’m on tocilizumab. My consultant told me he chose this one because it was one that I didn’t need to take methotrexate with as when I was on methotrexate it didn’t agree with me.

[SheilaT3271 in reply to aliplayspiano]

That was the same for me. I’m on Kevzara which is a biosimilar to Tocilizumab with no Dmard.

[ruth_p in reply to Tealblue2]

You can take any biologic without a dmard, it doesn’t help them work rather stop your body developing antibodies against the biologic. But I was on mtx and lef when humira stopped working for me. Tocilizumab has been my saviour.

[AgedCrone in reply to Tealblue2]

Nope l.I’ve been on just a Biologics for 8 years……of course you will need to discuss it with your rheumatologist , but it IS possible.

[oldtimer2]

It's thought that taking a DMARD with a biologic helps to prevent the body from adjusting and finding ways around the effects of the biological treatment. But it's not essential.

There is also azathioprine as a DMARD - it's been around for a long time but many rheumatologists seem unfamiliar with it.

[Tealblue2 in reply to oldtimer2]

Thank you both. As ever knowledge is power. Knowing as much information as possible helps navigate this illness. I appreciate your help!

[Madmusiclover in reply to Tealblue2]

I couldn’t tolerate high dose metho but am taking just 7.5 with Rituximab. No side effects at all. I used Baricitinib as a mono therapy for years.

[Hisue]

Yes, Lef & mtx, both gave me terrible panics, anxiety & depression, as well as GI issues. Now on a JAK .