GCA/PMR since Dec 2018. No symptoms of GCA currently but PMR rumbles. On prednisolone and leflunomide. Have not had a flare since last May and have been reducing very slowly since then. Saw locum rheumatologist in September who in a follow up letter suggested I try methotrexate (which I had been on and made me feel awful. Did he read my notes?). Since then I have had a nurse phone to ask if I wanted the methotrexate and asked how I was doing and a subsequent phone call asking me to go for cortisol and blood tests. I had a new ankle in January so couldn’t immediately go for blood tests as I could not drive but went for these tests on March 1. I now have a letter (no discussion f2f or phone) telling me to reduce prednisolone by 1 mg per month and stay on leflunomide and in September will be called to clinic to see whether the leflunomide can be stopped. I have asked whether I could come off leflunomide on every occasion I have had the opportunity in the past year as I do not like the side effects.
My question is when have other people come off leflunomide? Have they stopped leflunomide whilst still taking prednisolone?
I am currently on 4.5 Pred and shall come down very slowly rather than the instruction to reduce 1 mg per month!
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Talyfan
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The only person I know who came off leflunomide was entirely off pred but did so because of adverse effects (peripheral neuropathy). She was immediately back to 20mg pred to control the return of symptoms. It may be doing a lot more than you think it is.
Digestive symptoms, raised blood pressure and the need to check liver function every three months! Thanks for your reply. I just wish rheumatologist would talk about why she thinks it is helping rather than saying ‘do this’.
I was on Lef at one point but it didn't seem to be doing anything to help me reduce steroids, upset my stomach and I was startign to get tingling in in hands and feet which could have been peripheral neuropathy (it's a known possible side effect) so I was instantly taken off it when I reported the latter. I went on to try Hydroxychloraquine which seems to be helping, I have managed to reduce Pred drastically. Of course here is no proof it alone is causing that benefit. Methotrexate is not the only option though as a steroid sparer and your decision should be a two way process and choice, not being ordered to reduce by 1 a month when everyone is different. What an outdated and unhelpful attitude, 'I'm the Doctor/God, do as I say'. If it were me in a similar situation I'd reduce very slowly, monitor symptoms, ask for regular CRP tests (if they reflect inflammation levels for you, they don't for everybody).
I agree that my way forward is to go very very slowly. I tried methotrexate before lef and felt very nauseous so stopped that. Thanks for your reply. I have a bit of neuropathy at the moment after ankle surgery but think rheumatologist would not consider that lef was involved at all!
I had lef for about 18 months but came off it when I was constantly having infections and having to up my steroids and also because of neuropathy in my foot and leg. I then slowly decreased my pred by half mg a month. That is still going well.
You are at such a low level of pred I can’t understand why they would introduce any other steroid sparer at this stage.
There certainly seems a lack of the patient/ professional working and supporting each other relationship in your case, unfortunately.
After ankle surgery in Jan I am also having a bit of neuropathy and am wondering if lef does not help. Been on lef since May 2022 but have had frequent flares in this time. Have got to current dose by going very very slowly. Thanks for your reply
I’m only on the second month of LEF but my understanding is that it does more work on the underlying problem compared to pred which works on the symptoms. ( PMRpro will explain better I’m sure)
And I thought one of the main reasons for taking it was to help come off steroids faster and sooner.
I’ve never heard of anyone taking methotrexate at the same time as Leflunomide though.
Been on lef since May 2022. Had several flares since then. Have only really got to low doses of Pred in last six months by reducing very very slowly. Not convinced that lef is helping. If it does work on the underlying causes why is it not prescribed routinely. Thanks for letting me know your story.
They don't really know what the underlying causes are - even Actemra is only a very expensive steroid sparer, interfering with the main inflammatory substance IL-6 but there are others as well which it doesn't work against. I wouldn't be convinced that LEF is doing a lot either - though of course you only find out if you stop taking it.
I suspect that like all the DMARDs they like to try using, LEF has a specific mechanism that helps some patients but not all. It inhibits a mitochondrial enzyme which probably then has some effect on some PMR.
Apparently MTX and LEF are sometimes used together but that makes the adverse effects even more likely.
Yet again, New Zealand is clearer about adverse effects than many countries:
I had to stop after one year due to increasing numbness in feet and was starting in hands.
Also had diarrhea daily and plenty of dizziness.
My pred was down to 5.5 which was the lowest I had ever achieved.
After stopping leflunomide I was back to 15 mg within weeks as I was constantly in pain. I also coincidentally had a very painful bursitis attack on my left shoulder which thankfully eventually tapered off and am pain free now.
No more steroid sparing drugs for me as I would rather continue my slow taper of prednisone which is now at 11 mg after 5 and 1/2 years.
That is my concern. That if I stop I may have to have a large raise in pred dose. I wish I had never started as the only thing that seems to work for me is reducing very very slowly
Same here. I was previously successful and made it to 10 mg without issues - should have kept going with the slow reductions. One thing to mention in my case is that my stress level is high due to my being a caregiver for my wife over the past couple of years. I think stress plays a huge part in the PMR recovery process.
Couldn't agree more - and luckily doctors here do consider the stress factor. Well, most do. There was the one who told me to avoid stress the week before my husband died after a longish illness ...
I've just been put on Lef this week, after getting to 2mgs Pred, but having a flare 2 months ago, 6 months after coming off Tocilizumab. Now on 10mgs Lef and have come down again from 40 mg Pred to 15. Looking forward to discovering if I'm going to be one of the people it has a bad effect upon. Blood tests every two weeks for a coupe of months, have to take daily blood pressure, as everyone knows. I used to like the game of snakes and ladders... less enthusiastic now that it has a different connotation.
I took pred for 4 years just couldn’t get past 5 mg, Rheumy stated me on Leflunomide to reduce pred, took me about 6to9months to get to zero pred. Had to go up from 10mg of Leflunomide to 20mg as with no pred 10mg of Leflunomide wasn’t enough to keep pain away. Stayed like that for another 4years until I started getting male boldness then Rheumy suggested to go down to 10mg, I bought biotin supplements for my hair and within 3months my hair grew back, I continued with no pain. Last year I tried taking 10mg Leflunomide every other day, with in about 8 months I couldn’t walk up the stairs again and other symptoms returned. Went back to taking 10 mg every day, took a couple of months then I was back to normal. In 5years of taking Leflunomide I am now having blood tests from every month to every 3 months, my liver and kidneys, inflammation levels have been fine. Apart from the first 6 weeks of starting Leflunomide when I had stomach pains and diarrhoea I have had no problems at all.
I was on leflunomide but had to stop due to side effects. After 2 or 3 months my pmr symptoms worsened and my rheumatologist persuaded me to try methotrexate. This did help but in the end I had to increase my prednisolone dose by 5mg to get back to the level of well-being I was when I was on the leflunomide. Nearly 3 years later I've slowly tapered to 2.5mg pred. Who knows if I'll ever get off prednisolone totally only time will tell and if I do when will I stop taking methotrexate.
I tried methotrexate first and did not get with it. My fear is that I may get to my lowest manageable dose of pred and when I remove lef I will flare again. I wish I had stuck only on pred and reduced very very slowly. I am currently on 4.5 mg after 5 years. Like you who knows if I will ever get off it but here’s to trying
I sometimes wish that too, I'm more knowledgeable now with the help of the 'experts' on here than I was when I was prescribed leflunomide. At that point I was 'stuck' above 10mg of prednisolone, could I have got lower without leflunomide or methotrexate? I'll never know but I definitely underestimated the positive effect the leflunomide was having on my symptoms when I stopped taking it. Good luck!
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