Leflunomide

[Storm-boy]

Firstly thank you so much for this forum. Pretty much everything I know about PMR comes from here. I am so grateful. Having had PMR for 14 months now I am on 8 mg Pred daily. I have tried reducing, too fast I think but have had to go back up. Today my rheumy told me that as I was so unsuccessful in reducing I should change to Leflunomide. Does anyone know about this drug. I don’t think I’ve seen it on the forum. I also think I was unsuccessful in reducing because I had no idea what I was doing and I was given no information and had no understanding of the whole thing until I discovered you guys about a month ago.

[PMRpro Ambassador]

You don't usually "change" to leflunomide, it is a steroid sparer like methotrexate and, like methotrexate, despite an early small study that claimed 21 out of 23 subjects went into remission, in real life it isn't anything like as good. It has some unpleasant adverse effects so it isn;t a perfect answer whatever doctors claim in advance.

Someone in the Scottish charity tried MTX but only got a few mg lower and never felt well. She switched to leflunomide and after a mixed set of experiences is now doing well - though I think she is still on some pred but I'm not sure. She says she felt the LEF (kick in) and was able to get off pred but then developed quite severe neuropathy at 20mg and stopped the LEF which resulted in a return to 20mg pred to get things under control. She then re-started the LEF at a much lower dose (10mg) which wasn't enough and she increased to 15mg which improved the result. I'm not sure of her relative doses now but she was doing well last time I heard her speak about it.

[jinasc]

1. Did your Rheumy actually say " change to Leflunomide." If so grrrrrr.

Leflunomide is a steroid sparing agent and not a replacement, it also comes with its own side effects.

As you now have come to understand you have been reducing to fast take a look at the Tapering plans in the FAQ section.

DSNS has had a small trial and the following might help you in discussions with your Rheumy, who if he said that statement needs a bit of educating in my eyes.

" Dr Sarah Mackie was interested and is a Patron and a leading researcher on GCA&PMR and has kindly allowed us to inform you of progress. . Dr Mackie emphasizes that you should always talk to your own Doctor.

“We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as

part of the FACT study protocol.

The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a

research ethics committee; this study isn’t actually designed to test different steroid

reducing regimes, but is an exploration into causes of fatigue in people taking long-term

steroids.

We incorporated DSNS as an option on the basis that we know that DSNS, or something

like it, is already used by many patients in the community and because we didn’t

necessarily want to taper steroids over-fast in people who were experiencing fatigue. The

study is still ongoing.

So far it seems that some patients find that DSNS suits them well, especially those whose

symptoms tend to flare up when they step down their steroid dose.

However, DSNS will not suit everyone. DSNS is just one of various different approaches to

tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this –

you should always talk to your own doctor about what might be best for you.”

Dr Sarah Mackie, rheumatologist, Leeds.

This was published in a magazine produced my PMR & GCA UK North East Support (now closed) so is in the public domain.

Knowledge is Power..........so read up in the FAQs.

[Storm-boy]

Thank you PMRpro and jinasc. She said start Leflunomide and then after 3 months come off the Pred. She wasn’t interested in trying to taper more slowly. I have just started DSNS and would like to give it a go before going to another drug. I have very little side effects from the Pred.

[PMRpro Ambassador in reply to Storm-boy]

She can't just stop 8mg pred cold turkey anyway - she could make you very ill. After 14 months at above 8mg your adrenal function will be compromised and you MUST taper the pred dose slowly, probably over at least 6 months, possibly longer, to allow adrenal function to return.

I cannot believe so many rheumies, who use pred long term for PMR and GCA, are so ignorant of the tapering requirements. And as I have often said about MTX, if it replaced pred then they would use it from the outset rather than pred and there would be no need for tocilizumab/Actemra or anything else. The same applies to LEF.

[Storm-boy in reply to PMRpro]

Yes that all makes sense. Think I’ll stick to DSNS and probably change Rheumatologist.

[DorsetLady PMRGCAuk volunteer in reply to Storm-boy]

Sounds like a plan…..

[Jackoh]

Really when I hear of this advice given by a rheumatologist it makes me so annoyed! I tried Leflunomide for about 18 months as a sparing agent. It didn’t work for me although I know for some it has helped but to talk about stopping the pred after 3months and just being on Leflunomide to me is fool hardy. 💐

[Storm-boy in reply to Jackoh]

Thank you so much for your advice

[Lizzery]

I think I was about where you are now, when it was suggested I try leflunomide as a steroid sparing agent. This was about 8 or 9 years ago. I have only now managed to get down to 2mg pred while now taking 15mg leflunomide. In hindsight if I knew then what I know now, I think I would have just stuck to pred and taken longer over each reduction. Although at times when I’ve had periods of not taking leflunomide, I’ve always had to restart. It’s all a bit of a lottery and each rheumie seems to have their own way do dealing with PMR!

[Storm-boy in reply to Lizzery]

Thank you Lizzery. Great information

[Zebedee44]

Hi, I was prescribed leflunomide a year ago by my Rheumy as a steroid sparing agent as I was struggling to get below 8mg after five years of PMR. After reading the enclosed leaflet and researching Leflunomide online and asking folk on this forum I decided to stick to SLOW tapering based on how my body reacted. I’m only now tapering to 6.5mg. Still not sure about introducing leflunomide but it takes a long time to get out of your system once you do start so be sure you know all about it.

I’m not sure your own Rheumy has been quite straight with you.

[Storm-boy in reply to Zebedee44]

Thank you Zebedee44. I agree with you