Leflunomide

[bakingD]

Has anyone had experience of this drug for PMR??

Any info would be most welcome- have had PMR since May 2018 and Rheumy desperate to get me onto a DMARD

THANKS

[PMRpro Ambassador]

What dose of pred have you got to?

[bakingD in reply to PMRpro]

5mg fairly stable on that have probable bursitis in my shoulder so having US scan tomorrow and maybe a cortisol inj for that- otherwise am feeling fairly well controlled but not at a point where I can reduce further, ie still some stiffness on sitting for a while and still a bit of bilateral shoulder aching.Rheumy thinks my new shoulder prob is unrelated but am not so sure!!he wants me on Methotrexate but I would rather try Leflunomide out of the two- it's so difficult as he says he has many patients who have managed to reduce and get off steroid using A DMARDs and then wean off the DMARD so it is v tempting

[DorsetLady PMRGCAuk volunteer in reply to bakingD]

There’s nothing to say you don’t get off Pred anyway - and anything below 5mg is a pretty benign dose anyway -

medpagetoday.org/rheumatolo...

[bakingD in reply to DorsetLady]

thanks v much very good to hear will continue as I am!!

[PMRpro Ambassador in reply to bakingD]

At 5mg pred after 16 months I would refuse pointblank to take any DMARD at all. It is your choice, you are at what is called a physiological dose (similar to the amount of corticosteroid your body produces in the form of cortisol) so there are no adverse effects and you are at a very early stage of PMR.

The study discussed here

medpagetoday.org/rheumatolo...

found that "Only 19% of patients discontinued glucocorticoids by 1 year after the onset of PMR, 37% discontinued by 2 years, and 50% discontinued by 5 years. Only 58% discontinued glucocorticoid use by 10 years after disease onset. At 10 years, however, at least 97% of patients reached a glucocorticoid dose of <5 mg for 6 months."

and that so-called pred side effects were no more in the PMR population than in an age matched population not on pred.

DMARDs themselves have side effects, some can be far worse than pred. And they mess with the immune system - in combination with pred immunologists are concerned there is an increased risk of developing cancers in the long term.

[bakingD in reply to PMRpro]

thanks smooch just what I needed reinforcing tome

[bakingD in reply to bakingD]

oops typo error thanks so much!!!

[Hidden in reply to bakingD]

😂😂😂 It's smooch from now on.

[bakingD in reply to Hidden]

ha ha v good!!!

[DorsetLady PMRGCAuk volunteer in reply to bakingD]

I thought you were calling PMRpro “smooch” ! Nice one! 🤣😂😳

[bakingD in reply to DorsetLady]

Very good typo -oops!!reminds me at weekend I Was with a large group of friends and someone said 'Duck egg blue' which was heard by someone as 'black and blue' , which was heard as 'lack of food' any me!!!

[Hidden in reply to bakingD]

🤣🤣🤣

[Hidden in reply to DorsetLady]

That's my intention....🤗

[Singr in reply to PMRpro]

Good advice!

[HeronNS]

Have you been having difficulties tapering? PMR usually lasts for at least two years with an average duration close to six years. You wouldn't really need to consider a DMARD unless efforts to taper slowly are unsuccessful and your dose is remaining too high. Tapering is usually successful if it is done slowly enough and then a DMARD isn't needed. You aren't looking to get to zero pred until PMR has gone into true remission, only to achieve the lowest possible dose of pred which controls the symptoms, usually anything equal to or lower than our normal cortisol production is considered realtively safe for the long term.

That being said I've read that this particular one is possibly more effective for PMR than others.

[DorsetLady PMRGCAuk volunteer]

Why?

You’ve had PMR less than 2 years - what’s the rush?

[bakingD in reply to DorsetLady]

Ah needed to hear that yes exactly what's the rush thanks

[scats in reply to bakingD]

I was going to say the same . To reduce to single figures in 2.5 years is fast compared with what I have achieved. I had a similar problem with my rheumy recently. I was able to talk her out of methotrexate by educating myself with the help of the forum. It is not recommended for people with a history of chest problems, which I have. I agreed that leflunomide seemed a better bet but still managed to persuade her to give me another year before starting a DMARD.

I have had PMR for nearly 4 years now and was on 11mg when I saw her. It's amazing how differently different experts view this condition.

[bakingD in reply to scats]

Hi Scats

hope you're able to reduce at some point soon but think Pred is a safer bet-

[scats in reply to bakingD]

I agree. Better the devil you know!

[GOOD_GRIEF]

DMARDs work wonders for RA but don't do much of anything for PMR. Many RA patients are given a course of pred before or upon diagnosis to get symptoms under control, and then tapered to a DMARD.

This theory doesn't seem to hold true for PMR as it's a different condition, and a different inflammatory issue. Though a few people have had success, but because it hardly works on any PMR patients, the research can't differentiate between progress with and without the DMARD, as the cause of being able to taper the pred could easily be a dimunition in the PMR itself.

If you had RA, it is unlikely that 5mg pred would keep it from advancing.

Take the DSNS plans with you to show your dr what does work for most PMR patients.

Unless there is another reason to get you off the pred that's directly related to taking pred, there's no reason to rush the taper at this point.

[bakingD in reply to GOOD_GRIEF]

thanks so much- yes my rheumy is very good at checking at each apt if I have any pain anywhere else etc- so guess he's making sure it isn't RA- that's good to know

[Lochy]

DX PMR March 2016.

I was persuaded to start leflunomide back in February due to big problems with my left knee. I was desperate so happy to try anything.

Was on 10 mg then and currently back at 9 as knee pain really causing me a lot of problems.

I felt I reduced to 8mg relatively quickly and assumed it was the leflunomide but I believe my reductions have been successful due to fluid removal and steroid injections in my knee. Most recent one early June, wore off towards end of July and now I feel back to square one 🤬

I started leflunomide believing it may specifically help my left knee. 7 months later I don’t think it’s helping.

I don’t see my rheumatologist until mid November so have been emailing her. Can’t go on with my swollen and painful knee......it’s really getting me down and affecting my quality of life!

I suppose we’re all different but unless you’ve got a specific reason (like my knee) I wouldn’t bother with it. If only I could taper slowly using DSNS method I’d be happy with that. You’re so lucky managing to taper to 5mg in just 18 months. That’s really positive!

I’m considering stopping the extra drugs myself but then think perhaps I should keep going until I see my rheumy???

I just hate having to try and make these decisions myself but feel l need help to move forward.

Good luck with your rheumy but I’d say ‘no’

[bakingD in reply to Lochy]

Thanks for your advice is there any way you can see your Rheumatica earlier so you can retaliate it over ?

[Lochy in reply to bakingD]

I’m planning on trying to get an earlier appointment or pay for a private one ( I’m UK based) so fingers crossed!

[Jackoh]

Hi I have been on lefludomide. But in your case I agree with everyone, that it seems very unnecessary to start a DMARD when you have made such good progress with your pred reduction. I did tolerate the lefludomide very well but I cannot honestly say that it helped my reduction of pred ( I was stuck at about 18 mg) I also developed peripheral neuropathy at the beginning of this year which was excruciating. I have no firm evidence to confirm Lefludomide caused this but with the agreement of my Consultant I came off Lefludomide in January of this year. From that time I have managed to decrease my pred to a level now of 11 and a half mg without a DMARD. I personally feel happier not taking the lefludomide . I was never too sure of its effectiveness for me personally and also I always felt more vulnerable to infection because I was taking two immunosuppressant drugs. I did also catch infections more easily which in itself made it more difficult for me to reduce.

As we’ve discussed before PMR is an umbrella term and some DMARDS ( when necessary) work wonders for folk combined with their pred.

Also it is something I feel to consider on a personal basis if you are really stuck on a higher dose of pred and just can’t get down.

In your case, like everyone else, I feel you have done so well to reach your dose, your Rheumatologist is pushing you, and personally I feel the addition of another drug at this stage is unnecessary. But as said before it is a personal decision.

[bakingD in reply to Jackoh]

Thanks v much for your reply this forum is so helpful really hope you get to reduce your steroids as able

[Peptink in reply to Jackoh]

Thanks for this. I have only been on prednisone since December 2019. Started at 15 mg and now down to 12. That amount doesn’t seem to be working. Rhumy had me down to 10 very quickly, but I convinced her I need to take at least 12. She reluctantly agreed but now wants me to take Lefludomide along with pred. I have decided not to take the lefludomide after reading about everyone’s experience.

[Jackoh in reply to Peptink]

Having only been on Pred since December 2019 it appears, to me anyway, a real knee jerk reaction to want you on Lefludomide so quickly. I originally went on Lefludomide as I found it really hard to reduce down from 18 mg of Pred. I think then I was in my third year of GCA/PMR. A little different to 3 months.

It might be that you are one of those folks who are better reducing a little slower ( say 1 mg per month) using one of the slow reduction plans pinned on this site. It appears that your Consultant Rheumatologist is just very keen that you reduce very quickly. Is there any medical reason for this?

I know most GPs will quote a two year duration period for PMR but latest studies have shown that it is more like 5.8 years on average.

The decision is obviously yours but it appears to me that having been on Pred for such a short time it is very early to consider another drug(DMARD) Perhaps further down the line if there were great problems reducing it might be considered then. This is something that you may wish to discuss with your Rheumatologist.

[Peptink in reply to Jackoh]

Thanks for the reply. I’m due to see her again in April.

[composition]

I have had PMR since Oct. 2018 and started on prednisone with rheumatologist, had one relapse as she tried to move it from 20 to 15 in one month and immediately went back to 20 mg. However, I then had 4 stress fractures in the spine [haven't really slowed me down, have a couple of braces and PT and am still pretty active. At that point she said there are 3 drugs for PMR: prednisone, Metho??? and Leflumonide, the last being the least tested. Because I had a hepatic resection for cavernous hemangiomas years ago, she did not want to use the 2nd [said liver damage doesn't show up as quickly as it does with Leflumonide and if that happens, it can be quickly discontinued and removed from the body] Bottom line is I have been on BOTH prednisone and Leflumonide for about 3 months and am slowly backing down off of the prednisone to 15 mg. in an attempt to switch to ONLY Leflumonide. So far I have had only a couple of questionable 2 or 3 days but nothing I can't handle, and bounced back from. So.... the goal is to stop prednisone and use on Leflumonide. I see the dr. in 2 weeks and anticipate another drop in Prednisone and will keep you updated. There are a couple of studies apparently that think Leflumonide is a hopeful alternative to steroids! Good luck!

[bakingD in reply to composition]

Hi yes there is a study ongoing at the moment for PMR with Leflunomide in Netherlands the study should finish not till 2022

[PMRpro Ambassador in reply to composition]

I'm sorry but I have to disagree with the statement "she said there are 3 drugs for PMR: prednisone, Metho??? and Leflumonide, the last being the least tested."

There is ONE mainstay medication for PMR: corticosteroids, usually in the form of prednisone, prednisolone or methyl prednisolone. Neither methotrexate nor leflunomide have been shown to reliably work in PMR on their own.

Methotrexate studies have disagreed about its role as a steroid-sparer with one saying it worked, one saying it didn't and the other didn't know. The Italian study which said it did result in a small reduction in pred dose after at least a year revisited it after 5 years and found that despite this small reduction in total dose, it made no difference to the rate of pred adverse effects.

A single pilot study with leflunomide in some 24 subjects claimed that 21 achieved remission from PMR symptoms. The drop-outs were due to the side effects. It was not considered good enough evidence to recommend it as a steroid=sparer in the 2015 Recommendations I know one person who found leflunomide did make a major difference to her, she felt it "kick in" she said. I believe she did get to a very low dose of pred but then developed neuropathy and tremor - a not uncommon side effect - so she stopped and was straight back to 15mg pred. She is now trying a half dose of leflunomide to see if that is enough to reduce the pred.

I don't disagree with trying these two drugs as steroid sparers providing the side effects are tolerable. But you cannot claim they are perfect substitutes for pred. They may help to get to a lower dose of pred in some people but it isn't a guarantee. What it does show, I think, is that there are a lot of different underlying causes of PMR - which respond differently to different drugs.

[Joaclp in reply to PMRpro]

I keep meaning to ask: other than vasculitis, what are the conditions thought to underlie PMR? Or are they unknown?

[PMRpro Ambassador in reply to Joaclp]

PMR is just the name for a set of symptoms, not a disease as such. Various inflammatory arthritides can present inititally with PMR-type symptoms in the early stages. There are some cancers. Thyroid problems can also mimic PMR. And others that I can't list off the top of my head I think.