Should I take Leflunomide?: I've had PMR since 201... - PMRGCAuk

PMRGCAuk

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Should I take Leflunomide?

judyb100
judyb100

I've had PMR since 2016. I think I have a fairly mild case, but I can't get rid of it! I've tried to get below 8/9 mg of prednisone many times, and it never works. Right now I'm on 8 mg.

My new rheumy ways if have "difficult to treat" PMR, and he's recommending that I take Leflunomide. He says the most common side effect is diarrhea, but I can see it has other side effects including liver damage, loss of hair, and many others.

The strange thing is that I'm feeling quite good even though I'm on 8 mg. of pred. I used to have fatigue but now I'm feeling a lot more energetic. I walk a lot and take "chair yoga" and "chair strength" classes. My hips are stiff when I wake up and they sometimes feel stiff on and off during the day, but it's all quite mild. I hate to make myself sick with Leflunomide when I'm feeling better than I ever have since I came down with PMR.

I have to see my rheumy next week. I'm thinking of suggesting that I try once again to taper to 7.5. The main difference between now and the last time I tried to taper is that I'm feeling a lot better.

As my doctor pointed out, there are no definitive studies on using Leflunomide for PMR, but it looks promising based on some preliminary studies. I found one of these studies online: ncbi.nlm.nih.gov/pmc/articl....

I really don't want to be on prednisone forever, but I'm afraid of taking Leflunomide. So hard to decide what to do!

23 Replies
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Hi

It’s really difficult to decide-I saw a really good Rheumy who said his choice of DMARD drugs would be 1st choice Leflunomide,2nd choice Methotrexate for anyone with PMR stuck on a high dose of Pred and/or suffering side effects from the Pred.He did not define what high dose of Pred is-when I saw him I was on 6/7mg alternating and because I had some inflammatory symptoms I was told to go back up to 7 mg for 3 months then try a cautious reduction-hope that helps

judyb100
judyb100 in reply to bakingD

Thanks! I think I'll do the same--reduce slowly to 7.5 and go back to 8.0 if necessary. Don't feel like I'm ready for Leflonomide.

The link you cite is an old one, dated 2013. Here is an up to date link dated sep 2017 stating insufficient evidence for using leflunomide for PMR.

practicalpainmanagement.com...

"Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica................

Disease-Modifying Antirheumatic Drugs

Due to significant morbidity associated with prolonged exposure to GCs, adjunct immunosuppressive medications have been evaluated to assess their GC-sparing effects in PMR. While disease-modifying antirheumatic drugs (DMARDS) have been successful in the treatment of other inflammatory conditions, insufficient evidence is available to suggest that hydroxychloroquine (Plaquenil, others), azathioprine (Azasan, Imuran, others), or leflunomide (Arava, others) are beneficial in the treatment of PMR. Methotrexate (Otrexup, Rasuvo, others, 7.5-10 mg/week) has been evaluated in 3 prospective randomized studies with variable results regarding steroid-sparing effect and reduction in disease relapse risk.16-18 In clinical practice, methotrexate is not initiated routinely at disease onset but can be considered in patients at high risk for developing GC-associated adverse events, or in patients experiencing 2 or more relapses.19"

I suggest a very slow taper of pred using the DSNS method in 0.5mg steps.

judyb100
judyb100 in reply to gifford7

Thanks for the more recent article. With insufficient evidence that Leflonomide is successful in treating PMR, I think I'll stick with a slow taper of pred.

My gut feeling is to stick with what you are doing. You are feeling comparatively well, and that’s great!

Bearing in mind the fact that PMR lasts on average 5.9 years you are possibly only half way through your time, and doing well.

What’s the rush? And why add in another drug with side effects when you are doing ok. Slowly does it...DSNS 0.5mg drops only when you are feeling pretty good

Good luck!

judyb100
judyb100 in reply to Mary63

Thanks. I'm glad that everyone so far agrees with what I'd like to do--continue the DSNS taper and hope for the best.

What happens when you reduce your dose? Honestly, I think symptoms rule, if you are feeling good, don’t upset the Apple cart. I have had PMR for 3 years too and have just managed to get to 5 mgs. I am very reluctant to add more toxins. I intend to continue a very slow taper, if I can resist my consultants for a little longer.

You're lucky to be down to 5 mg. I hope I can get there (without Leflunomide).

PMRpro
PMRproAmbassador

If I had got down to 8mg, which is what is described as a physiological dose, about the same sort of amount of corticosteroid the body needs and produces daily in the form of cortisol, I would be very reluctant to add in leflunomide with all its potential unpleasantnesses. Though I might agree to try it and see how it goes - IF you have no adverse effects it may well be worth trying, it can work and I have a friend in the PMRGCA Scotland charity for whom it DID work very well in terms of PMR. Unfortunately it caused neuropathy and tremor so currently she is trying a much lower dose than usual to see if it is enough.

Recent work has found that the median duration of management of PMR with prednisone is 5.9 years and that there are not significant adverse effects to this level of dosing with pred:

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

are two articles about the same study from a top team at the Mayo.

This is NOT "treatment" of the underlying disease process, it is management of the symptoms while waiting for the autoimmune part of the illness to burn out and go into remission which it does for 95% of patients sooner or later. But the oft-quoted 2 years is pie in the sky. PMR will go when it is ready. If in the meantime you are well below 10mg pred, I'd keep working on that.

I have tried methotrexate to please my rheumy - after a month I felt as if I had been run over by a bus, with ever increasing fatigue. Now possibly had I stuck it out it might have improved but that was the cherry on top when it came to adverse effects!! I could maybe try the leflunomide, I'm really not keen! And bear in mind I take 15mg - which is what I have required for some months to manage atrial fibrillation episodes.

In a pilot study done by Prof Dasgupta they had 21 of 23 patient achieve remission with leflunomide. One was lost to follow-up and and one dropped out because of the adverse effects. One of the members of the study was on one of the forums a couple of years ago and told me that quite a few of the patients found the side effects very unpleasant and needed a lot of encouragement. I know a couple of rheumies I would trust who like leflunomide - others don't.

My personal view is that these things, so-called steroid spareres, MAY be worth trying IF you can take them without feeling worse AND you are stuck at a dose above 10mg. OTOH, they come with their own bag of tricks and immunology experts are expressing concern about the use of multiple immunosuppressant drugs and the potential longterm problems with the immune system. I would always choose to take 10mg pred than 8mg pred plus a "steroid sparer" which is almost certain to have more problems than that 2mg pred!

judyb100
judyb100 in reply to PMRpro

Thanks to you once again for your wise advice. I'm going to stick with pred and try going down to 7.5 using DSNS. Hasn't worked in the past, but I've been feeling so much better recently that I have hopes that I'll be able to cut back a little on the pred. Maybe I'll try Leflunomide later if I have never-ending problems with tapering.

I was persuaded by my rheumy to start Leflunomide three months ago as I couldnt get below 10mg Pred. At that time I was having terrible pains in my hands, which soon disappeared! Been on l0mg Pred and 10mg Leflumonide for past three weeks and due a blood test and see the rheumy at end of month. On the whole I feel quite good, though have had a bad cold which has left me a bit weary and full of catarrh. This week is my 2nd birthday with PMR - at least I feel better than I did then!

judyb100
judyb100 in reply to Mary73

Glad that Leflunomide seems to be helping you! If you don't mind, keep us informed on how it's working. It is so hard to decide whether to take one of the pred.-sparing drugs.

I was put on leflunomide over a month ago as I had great difficulty getting tapering below 5mg and ended up taking 15mg. The Rheumy told me to take 10mg leflunomide daily and to take 1mg less of Prednisolone a month until I no longer take it (this will be December 30th) So far, I have had no ill effects. Many of the negatives have disappeared: for example, when I get up in the morning I no longer feel ill. I can step off a train without clinging onto the hand rail for dear life and my flexibility has improved so that I can do some housework. I have no bad effects so far. I think that leflunomide has masked many of the ill effects of prednisolone.

That's wonderful that Leflunomide is helping you. It's so hard to know what to do, as some people have good results and others have bad side effects.

Mary73
Mary73 in reply to 43tripandskip

Sounds as if our rheumies are some the same wavelength. Mine is reducing pred by 1mg Rach month. Will be interesting to see blood results at end of month

I think with DMARDs one has to persevere. I had to try methotrexate, leflunomide and then azathioprine to find one that worked and didn't floor me. I stuck with leflunomide for about a week, diarrhea, hair loss, numb feet to name but a few. I have good reason to try a DMARD as I have developed osteoporosis from the steroids and now have several vertebral fractures and was stuck on 14mg. I have GCA PMR since February 2016 so I have had a lot of prednisolone. Azathioprine has helped, am now on 8.75mg, but I am very tired and keep getting colds, I have decided to stay with it for the summer.

Do you have other bad side effects? Have you had a large total dose of prednisolone? Discuss these with your rheumatologist as I have found DMARDs to be quite a difficult journey.

judyb100
judyb100 in reply to Cally55

Thanks for your perspective, as you've had a lot of experience with DMARDs. I can see why you'd try them if you've had osteoporosis and fractures. I have osteopenia and I've already broken a hip, so I'm not crazy to continue with prednisone. But I'm feeling better now and will probably try to taper at least one more time before trying Leflunomide. Hope you're feeling better throughout the summer!

Hi, my PMR started in 2010 and I began steroids in November of that year. I was prescribed Leflunomide to enable me to reduce the steroids, and I think this was only about 18 months after my diagnosis. I started on 10mg and as this wasn’t working am now on 20 mg. I am now in my 9th year of PMR or late onset rheumatoid arthritis as the rheumies have decided I now have. I still haven’t got off steroids, and am now on 4mg and trying to reduce to 3 1/2mg. As far as I’m concerned Leflunomide hasn’t done what it promised. However I had a protest about 2 years ago and came off it, only to find I had to increase the steroids and admit defeat as all the symptoms came back and had to restart Leflunomide. However I’m mobile, and within reason can do what I want to do, although I do have an Achilles problem which comes and goes.

With hindsight and what I know now I would have resisted the Leflunomide and tried a slower pred reduction, as I feel I may have got to where I am now, but who knows. I am where I am.

judyb100
judyb100 in reply to Lizzery

Very interesting that Leflunomide really did help reduce your symptoms, even if it didn't do all you hoped for. You're fortunate to be down to only 4 mg. I've never gotten close to that.

I started withPMR symptoms December 2014 which morphed into GCA in early 2016.During 2016 I was finding it very difficult to lower my steroid dose from 20/21 mg of Pred so my consultant prescribed lefludomide which I started in 2017. I was on lefludomide 20mg and didn’t find that I had any side effects. It does take quite a few months before you can start reducing Pred and my reduction started mid 2017. I still found it hard to reduce and also as the autumn, winter arrived felt that I was more susceptible to colds and UTI infections. I continued however with the Lefludomide until Jan 2019 ( 18 months) I did start to have problems with peripheral neuropathy which I realise now had started in my left foot some time before but because of daughter having twins, moving house and problems with my eye sight ( cataracts) this got pushed to one side. However in January of this year I had extreme pain in my calf of the right leg and this was diagnosed as peripheral neuropathy. I therefore, with my consultant’s consent, stopped the Lefludomide. Since then I have very slowly reduced to 13/12 mg of Pred and have not had any reaction that I can think of that has resulted in me terminating the Lefludomide.

I am not convinced that the Lefludomide did actually for me make a significant difference to the amount of steroids that I required- I still flared on it and also I had more infections, therefore I had to stop any tapering,thus making the tapering process longer. I did however at the time feel that I would preserve but the peripheral neuropathy was the final straw and I felt I would try without.

It’s a very personal decision and I know the person that PMRpro mentions has had great success as the Lefludomide appears in her case to be affecting the pathway of her inflammation and giving her really good results.

I think if I were in your situation, like others have said before, I would be inclined in the first instance to try just tapering very very slowly first . If this doesn’t work you can always try Lefludomide at a later stage.I think if I reached the dizzy lows of 8 mg I would be ecstatic!!

Thanks for telling about your experience with Leflunomide. I'm sorry that you had those side effects including infections and peripheral neuropathy. So hard for us PMR patients to know what to do. Even though my doctor advises me to take Leflunomide, he explained that it's difficult for him because there is no definitive research on PMR and these prednisone-sparing drugs.

I started leflunomide in February this year so relatively early to assess. Prescribed due to swollen knees which my rheumatologist claims is a little unusual in PMR. She believes I may have an inflammatory arthritis too. We agreed it was worth giving it a go as I was in a lot of pain in my knees and found it very restricting and it was getting me down a bit. Also had fluid drained from both knees and steroid injections in both knees at the February appointment. So far I don’t seem to have any side effects. Slight diarrhoea at times but nothing significant. I’m also on hydroxychloroquine which potentially has a similar side effect.

Just three months into new drug regime my knees are slowly getting bad again. Assuming it’s the steroid injection wearing off. This might be the time to tell whether the leflunomide is making any difference at all. I intend to discuss this at next appointment on 3rd June. I’ve just tapered successfully to 9mg - well apart from my left knee in particular! Everywhere else in my body feels good, that is my typical PMr pains have gone or are in control. I would rather stop leflunomide and hydroxychloroquine if not making much difference but I know the next suggestion will be methotrexate. Not sure why but that’s what they always say to me. It’s only because I regularly have elevated liver enzymes (for no apparent reason, and I have had a liver biopsy!) that we agreed to start with hydroxychloroquine and then leflunomide.

Can anyone tell me if methotrexate is much stronger that’s the others or just different chemically?

As many have said give it a go particularly if you have other things going on that might not be typical PMR. It might help but if not be pleasantly assertive about changing or stopping the drug.

Good luck.

judyb100
judyb100 in reply to Lochy

Glad to hear that you haven't had serious side effects with Leflunomide and that you've been successfully tapering your pred. When I listen to my doctor, Leflunomide sounds OK. When I read about it on the internet, it sounds scary. So it's so helpful to hear how this drug has actually affected other people!

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