Leflunomide next drug doctor wants me to try

[Pawscat11]

I ned your help again please. After a million blood tests and a PET- CT everything points to PMR diagnosis which I got 3 years ago being correct . (who would have thought it). New consultant now started the relentless you need to get your steroids down by 2.5 per 2 weeks. I told her that's not happening anytime soon as I have just had to up them to cope with the flare from getting to 10 from 15 in a week to have the scan. On 20mg this week as in unbearable pain. 😭She has now prescribed Leflunomide ( which apparently I have to get government permission for in Spain) What is this drug? Does it work with PMR ? I feel like I am just taking the next thing to appease the doctors. Any help appreciated.

[PMRpro Ambassador]

There has been a fair bit of discussion about leflunomide in the last few weeks

This probably the most recent

healthunlocked.com/pmrgcauk...

and if you go to that you will find loads of links to posts about it in the Related Posts. Heaven knows why they didn't appear in Related Posts to your post!

I did wonder how much she knows about PMR - suspicions confirmed. As for 2.5mg per 2 weeks - whatever world is she living in? Hope she gets PMR one day and a similar doctor!

Like methotrexate. it works for some but not others. Like methotrexate, if and when it works without the adverse effects being too bad, it can be good. There was a small study done some years ago that claimed 21 out of 23 subjects went into remission - what it doesn't say in the paper is that several patients really struggled with it at the time. They are both DMARDs and used a fair bit in RA but PMR isn't RA. There is a study ongoing in the Netherlands using leflunomide but Covid got in the way of recruitment and it won't report for sometime yet.

[Pawscat11 in reply to PMRpro]

Thank you

[Jackoh]

Sounds like she’s just desperate to get your level of pred down. Isn’t that what we are all trying to achieve? It isn’t like we love being on this drug and in your case you had no choice but increase. That’s the point really we are listening to our body and whenever possible getting to the lowest dose of pred that we can achieve. PMR doesn’t respond to bullying! It’s definitely in charge!!

I did try Leflunomide for about 18 months but didn’t achieve any significant benefits. It does work for some in the reduction of their pred but certainly not for all. Personally I have been more successful on a very very slow method of reduction. It is really up to you whether you give this DMARD a go. Read up on all the comments.

There is a general consensus of opinion with some Rheumatologists that we should be off pred in about 2 years. Tell that to your PMR!! For some of us, I was diagnosed end of 2014, it has been a much longer journey, and that’s ok.

[PastelsinArt]

I have been on 10mg of Leflunomide for 4 months and it seems to be going ok. I was previously on Tocilizumab/Actemra to help with steroid tapering but you can only get this for a limited period in UK. I have PMR and GCA since early 2020 and in spite of gradual tapering have had a few flares. Since getting to 3.5mg I've used DSNS method.

Leflunomide can give you diarrhea, which I dreaded but I was ok, a fairly mild reaction. I'm soon increasing the Lef to 20mg, and hoping this won't give me a worse reaction but will help on the long, slow process of tapering pred without flares.

Lef is not an alternative to pred. Used alongside it to help manage the symptoms is how I understand it. Good luck.

[bBarnabus]

I saw a rheumatologist in Granada with ‘years and years of pmr patient experience’.

She refused to believe I had Pmr as I had no inflammatory blood markers and insisted on my reducing 3mgs per month from the 18 mgs that I was then taking. I tried it and it got me nowhere, ended up ill so I went back and she recommended a different rheumatologist which I never bothered going to as I suspected she just wanted support for her own viewpoint. Luckily my local gp is happy for the time being for me to manage my own dosage as I suspect she doesn’t know much about pmr.

In short in southern Spain I don’t think they are up to date with new research. But like a lot of doctors everywhere they know it all !!

[PMRpro Ambassador in reply to bBarnabus]

It's strange - because they are usually pretty up-to-date with GCA as there is a fair bit of research done in Spain. Maybe Granada is a bit far south!

[bBarnabus in reply to PMRpro]

yes this was polymialgia but they come together I guess.

[PMRpro Ambassador in reply to bBarnabus]

Sometimes people good at managing GCA aren't as good at PMR - and it is often quite different. GCA is usually simpler to kick into the long grass for some reason.

[Caloo650]

It's worth a try of couse and you may be the lucky one with no side affects.

Diarrhoea was the worst for me but apparently for most people is gone after a couple of weeks. I experienced high blood pressure and was not prepared to add another drug to lower it to my arsenal.

So I have walked away from Leflunomide and still haven't told rheumie of my decision. Sitting on 5mg atm and every attempt to get to 4.5 fails.

[Pawscat11 in reply to Caloo650]

Thank you. As I am still at 15mg 3 years in I think its probably worth a try although I tried MTX and was really ill so lets see.

[Caloo650 in reply to Pawscat11]

I also tried MTX and had stomach upsets. All the best with Leflunomide

[Pawscat11 in reply to Caloo650]

They have now amended to hydroxychloroquine.

[Karenjaninaz in reply to Caloo650]

Whn I was at such a low dose only 1/4 mgm was tolerable.

[Caloo650 in reply to Karenjaninaz]

oh ok I'll try that

[winfong]

No issues with side effects for leflunomide. Not sure it's taking care of my LVV/GCA/PMR though. Inflammation #'s seem consistently up with it.