Leflunomide

[Magictherabbit]

I was diagnosed with PMR in 2019 …started on 15 mgs of prednisone with great effect . I have been tapering down since .. getting down to 3/4 mgs over the years but still in pain . I saw my rheumatologist today and he has prescribed me Leflunomide to take with prednisone. I have been on a really slow taper since last July but have been up and down …currently on 4 mgs and struggling especially in the morning with all over pain and stiffness.

Wondering if anyone else has been prescribed this drug ?

[PMRrunner]

I was prescribed it when I was struggling to get below 12mg. I did eventually get to get to below 5mg but had to stop because of side effects. I now take methotrexate and 51/2 years after diagnosis I'm tapering very slowly to 2.5mg pred. For me even with a steroid sparer my prednisolone tapering has been slow. I also suspect that at the moment 3mg/2.5mg might be as low as I can comfortably go.Good luck with whatever you decide

[cycli]

I also and it helped get me below 22.5 where I stuck 3 times and flared before leflunomide. No side effects yet and at 6.75mg. Due to go to 6mg in Feb. 2.5yrs in. Good luck

[winfong]

I was prescribed it because of Actemra side effects. Seems to be working, though I also seem to be stuck at 7 for now.

[DogAgilityObsessed]

I’m picking up my prescription tomorrow. Currently on 20mg pred. A little worried but encouraged by some recent and not so recent posts on this forum.

[Louisa1840]

I tried it for a few months but stopped because I was starting to lose sensation in my lower legs which, apparently, can be a side effect. It's well worth a try and it definitely works for some.

[PMRpro Ambassador]

Now you have posted you will see a list of previous posts about leflunomide. Plus there is this one which I posted on behalf of a senior member of PMRGCAScotland.

healthunlocked.com/pmrgcauk...

I have to say - if I had got to 5 or 4mg pred in my own I wouldn't be keen on accepting any steroid sparer - none are proven to get you off pred altogether and some have some very unpleasant adverse effects. It is one thing when you are stuck at above 10mg or so.

However, if you say you are in pain - you are probably at slightly too low a dose anyway or you might do better if you adjusted the time at which you take your pred. Splitting a dose can improve morning symptoms considerably as can taking it very early in the morning.

[Flosy]

Yes I am taking leflunomide have been taking it for over a year now.i don't get any pain with it.

[Nightingales]

Like a lot of things you may have to try it to find out as it seems to be an individual response. I have just stopped taking it after a year because I had every side effect listed and felt so generally awful. I gave it a years try because I got Avascular necrosis of the hip and I know I have to get off the presdnisolone. One day I hope… Best wishes, hope it helps.

[Jackoh]

Hi . I was on Leflunomide for about 18 months but because of recurrent infections and also the development of peripheral neuropathy I decided against continuing with it.

I agree with PMRpro - why add another drug at this stage?

Also agree though with the view that maybe you are on a dose a tad too low for you. You could raise the level of your pred slightly to ease the pain and when this is under control to start on a very slow method of titration. 💐

[Magictherabbit in reply to Jackoh]

Thank you for all your comments that have been very helpful. I have decided not to go ahead and take Leflunomide…it’s only when you get home and read all the literature and have a proper think about it which is not easy to do when your having your appointment. I agree with PMR pro ….why does the rheumatologist want to add another drug at this stage with possible unpleasant side affects. I’m going to go up to 5 mgs for a month and then start the very slow taper again

[DorsetLady PMRGCAuk volunteer in reply to Magictherabbit]

For what it's worth totally agree abut not adding in another drug when you are below 5mg anyway... Different if you are in teens and can't reduce.

Good idea to return to 5mg and then slow taper... choice here -but would suggest one of usual 2 suspects [you can guess who]-

healthunlocked.com/pmrgcauk...

[Jackoh in reply to Jackoh]

I’m glad you’ve been able to make a decision. Let us know how you get on. 💐