Time to try another drug

[zebsky]

Hi everybody I'm a newbie on this site. I am 69 years old and I have had PMR for nearly four years. I started on Prednisone 15 mgs and after six months I was also put on Methotrexate. I have now been on Methotrexate for over three years and I am still on 7 mgs of Prednisone.Today my Rheumatologist has changed me from Methotrexate to Leflunomide.My question to all you good people is what do you know of this drug and have any of you actually been taking it? I don't start taking this drug for another couple of days so I am very keen to gather any information I can. Thanks

[Sheribrim]

I am not an expert but I would ask the question of your rheumatologist. WHY change? You are on a relatively low dose of Preds as I am (fingers crossed) and all appears to be going well for us. I am always wary as any possible side effects will take you back a step when you appear to be going along nicely?

I am also on 7mg and daily dose of Leflunomide. So I assume both drugs do similar work? You should ask.

[zebsky in reply to Sheribrim]

Thanks for the support Sheribrim - I feel as if I am being overwhelmed with this ongoing PMR condition and all the side effects that go with it. I think my rheumie felt I was getting worse as I also have Osteo arthritis and my doctor has put me on 8 Panadol a day for the pain and my CRP was 15. Her theory is that Leflunomide is hopefully going to help with my arthritis.Also I was down to 2mgs of Pred last year and I was not overly happy to be increasing my dosage not lowering it.Yes methotrexate and Leflunomide are both steroid sparing drugs.Lets look forward to a future for us with no PMR in it

[PMRpro Ambassador]

I know someone on methotrexate who is sure it helps her manage at a lower dose - but she is still on somewhere in the region of 5-7mg pred and can't get lower.

There was a pilot study done a few years ago using leflunomide in PMR where 22 out of 23 patients demonstrated a total or partial response - not quite sure what they mean by partial response! Everybody manages to reduce their dose to some extent! I also don't think there was any indication of how long the patients remained in remission. However - although one of the authors was Dasgupta, it hasn't been mentioned in the most recent recommendations for the management of PMR - even though he was one of the committee drawing them up - so they can't be that convinced of its effect.

A few days ago someone said on this forum that one of the top PMR research rheumies in the UK told them that the only steroid sparer they would consider using was leflunomide. I know a couple of people who have used it but had to stop because of its side effects.

I've had PMR for over 12 years, have been on pred for over 7 years - and so far no-one has suggested I should try anything to get the dose down. I have been down as low as 4mg but a flare in February sent me back to 15mg. I am now back to 10mg and stuck again. I don't however appear to have much in the way of side effects due to the pred.

I suppose it is like all the so-called steroid sparers - if you try them and you do well that is good. If you try them and they cause side effects - you can always stop.

On the other hand - the other question is how did you try to reduce and what were the problems you had? Many of us on the forums use this approach, developed from the experiences of patients,

healthunlocked.com/pmrgcauk...

which has allowed many to get to far lower pred doses than they had managed before. Many rheumies seem very cavalier about their approach to reduction and experience has shown us that a very slow approach works better than going at it like a bull in a china shop! The steps should be as small as it is possible to make them - or spread out over more than just a couple of days.

[christine2715]

I can only tell you that I took it for a while and it made me feel like I had been hit by a bus after a while so I stopped taking it. Was told the drug trial was only with 23 people but it was successful. I was on 20mg per day and some say 10mg works for them. I also tried Azathrioprine. I really find it hard to reduce the steroids. Have now been told to reduce 1 mg every two weeks. Good luck.

[PMRpro Ambassador in reply to christine2715]

Nice to "meet" you - I have read the paper reporting the trial and have often wondered what happened to the patient who dropped out! And how the others really felt while taking it.

If you have difficulty reducing the steroids - I don't see what makes them think 1mg every 2 weeks will work!! I couldn't do that.

Have you seen

healthunlocked.com/pmrgcauk...

[valrene]

Hi Zebsky I tried methotrexate but made me feel so sick all the time and it pushed my liver enzymes up so had to stop taking it, with a great struggle and pain I managed to get down to 5mg of steroids reducing 1mg every month, the first two weeks were hard but the second two weeks were better, when I got down to 5mg went to see Rheumy as I couldn't stand the stiffness and pain any longer, that's when he put me on 10mg of Leflunomide, only took 2weeks all the pain, swelling and stiffness went from knees, legs, ankles and feet disappeared, I walk miles with my dog now feel so much better, but I still have some pain and stiffness from my thighs upward but not like it was before, going to start reducing steroids 1mg every month now, hoping to get off steroids completely in 5mths time, Leflunomide did make me feel slightly nauseous a few pains in stomach and diarrhoea but persevered and now feel fine, so wanted to get off of steroids with the extra weight I have put on, high blood pressure and pre- diabetic so put up with the side affects and feel so much better, hope it will last.

[zebsky]

Hi Valrene I've only just found your post thx. I've now taken 10 mgs of Leflunomide for two weeks and I'm having no side effects and the pain is gone from my ,hip and knee.Ive still got neck pain but this is the best I've felt for a very long time so I'm very happy 😊I've just reduced pred to 6 mgs this morning and will reduce same as you are.Im sooooo tired of the extra weight ( mine is all fat now ) and all the horrible things we endure with PMR .I will follow how you are getting on as we are quite similar in what we are doing. Hope we are heading the right direction now

[valrene]

Hi zebsky thank you for your reply, not sure if Leflunomide works for everyone but it certainly has for me feel so much better in my self not so exhausted all the time, sounds like hopefully it is working for you, reduce my first 1mg of steroids to take me down to 4mg on the first of December will let you know how I get on, like you as we reduce steroids hoping the fat will start to reduce, take care and hope you carry on improving. Val xxx