Last November 2022, after a referral from my GP, to the hospital Rheumatologist, I was given a working diagnosis of Polymyalgia.
I had experienced shoulder problems since 2019, and been treated with steroid injections, intensive physio, and Prednisolone, but throughout 2022, things had got really severe. I was experiencing morning stiffness for over 2 hours, difficulty turning over in bed, bilateral upper arm and shoulder pain , groin pain, and pain trying to walk downstairs. I was back on Prednisolone from October, and increased to 17.5mg in November, then gradually cut down successfully to 10.5mg, after which I started noticing slight deterioration. I further cut down to 6mg .
I was back at the Rheumatologist this January 2023, and things were going reasonably well. apart from difficulty sleeping. He mentioned Leflunomide, if I continued to have problems with cutting down the steroids.
By 22/02/2023 I was back up to 15mg, and the question of Leflunomide cropped up again. The hospital sent me a pamphlet to read, and told me if I wanted to take it, they would give me a prescription, but I received no actual advice.
I would like to know if anyone in the forum has taken this drug, and any help or opinions you may have, before I make my decision as to whether I try it or not. My pharmacist said it is 1 tablet a day, and would stop the yo - yoing of of going up and down on the steroids.
I would be very grateful to hear from anyone with a viewpoint. Thank you
Sheila H
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Foxie52
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I took it for over 18 months before stopping due to side effects. It did help me reduce my pred dose though I suspect I may have managed it without if I had used a very slow taper earlier.
Hi Foxie52. I can't help re the Leflunomide as I have never taken it, but I'm sure a number of people on the forum have/do. Reading your post I do get the feeling, unless I have misread the post, that your tapering down with the Pred has been relatively quick. Once you start yo-yoing it does become harder to get things under control. It maybe that going back to a dose where you were last pain free and comfortable, staying there for a few weeks to clear out any accumulated inflammation, then starting a slow taper (tapering plans in FAQ's), but not moving to the next taper until you were sure things were settled, would be benificial and save having to add another medication to the mix.
My pharmacist said it is 1 tablet a day, and would stop the yo - yoing of of going up and down on the steroids.
Actually what will stop the yo-yoing is a slower taper, aligned with not reducing when you have, in your words, a slight deterioration. You should never feel worse at the end of a taper than you did before you tapered. Having got to 6mg within such a short time is ridiculously fast.
Couple of links to read, one on general info on your illness, and second a link to various tapering plans as suggested by Bcol which will avoid adding in another medication which has its own set of issues -
Agree with all that has been written about a slow taper and that prevents the yo yoing. I was started on leflunomide after not being able to reduce. I did have , I believe from the drug a problem with peripheral neuropathy in my feet so after about 18 months I stopped taking it. I have continued since on a very, very slow taper and have been successful in reducing my steroid dose. 💐
"My pharmacist said it is 1 tablet a day, and would stop the yo - yoing of of going up and down on the steroids."
It might - but it might not. There is no guarantee. It will depend on you being able to tolerate or not having adverse effects and then it works for some patients but not others.
To have got from 17-5 to 6 mg since November is very fast and frankly - no wonder you are flaring or stuck. Going SLOWLY is the best way to be able to reduce the dose. The median time to get to 5mg is 18 months - you are well within that target but it also means that half of patients take long than 18 months to get to 5mg and that is perfectly normal. PMR lasts as long as it lasts - not the mythical 2 years so doctors rabbit on about.
You are NOT aiming relentlessly to zero - you start at a higher dose than you need to get speedy control of the inflammation and then you titrate the dose to identify the lowest effective dose that gives the same result as the starting dose did. This is dealt with in a paper I posted about a few days ago:
Leflunomide can work well for some patients - but it isn't guaranteed to do so. I'm trying to get a post from a friend who does pretty well on leflunimide after a rather rocky start.
Had to increase prednisone from the 5.5 I achieved with Leflunomide back up to 15.
Suffered constant diarhea and then painful numbness in my feet and some in hands as well.
I wish I had refused this drug. Took it for a whole year and was pain free but now I am set back at least a year in my long journey of reducing prednisone.
And oh yes - a new ailment kicked in immediately after I stopped takling Leflunomide - bursitis in my left shoulder - have suffered for close to 4 months now recovering from that.
I have had PMR for 4.5 years and despite tapering extremely slowly - even slower than that recommended by DSNS, I could not get below 7mg prednisolone. I started Leflunomide almost two years ago, and was finally able to reduce further. I think it certainly has helped me. The side effects I have had are diarrhea (manageable) and headaches which went away after a while. So overall my experience has been good, I have found it helpful.
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