Leflunomide

[Caloo650]

How are people on this drug managing with it? Any side effects?

[Jackoh]

I was on this for 18 months. Had no side effects but didn’t really help me to reduce. Came off it when it was thought that this might be causing peripheral neuropathy. It is easy to come off so you could just suck it and see if it suits you personally. 💐

[Manihiki]

I have been on it for five years and it is fine

[Caloo650 in reply to Manihiki]

Have you reduced Prednisone?

[PastelsinArt]

I've been on Leflunomide since May. I wrote an update on it recently which I think you'll see if you go to my profile and look at Posts.

[valrene]

Have been on Leflunomide for 4 years, only drug that helped me reduce pred, had stomach pains and diarrhoea for may be the first 6 weeks, persevered and I was fine after.

[Caloo650 in reply to valrene]

Are you off Prednisone now? Hoping the diarrhoea will stop soon. Good to read that you're fine now

[Roltuba]

Interesting. Haven't seen any comment yet on the reason it's been prescribed. I'm not aware of use as a steroid sparer at least in UK. In my case it was prescribed due to a diagnosis of RA following MRI. I am reducing pred very slowly and am nearly down to 5mg. The Leflunomide has been very effective in getting on top of knee joint swelling and tendon pain. Re side effects I do have "looser" guts and had some finger tingling but it's not excessive. The Rheumy nurse who is monitoring my monthly blood tests (you have these when taking Lef. to keep an eye on your liver) says it's ok to drink alcohol provided you don't exceed the recommended limit.

[Caloo650 in reply to Roltuba]

Leflunomide was prescribed for me for PMR symptoms stiffness when I couldn't get below 4.5 mg as a sparer. Rheumie keen to get me off Prednisone because of my osteoporosis. Thanks for your reply. I tried Methotrexate but gave it up after nausea.

[PMRpro Ambassador in reply to Roltuba]

It is used as a steroid-sparer in the UK - Prof Dasupta supervised a study published in 2012.

pubmed.ncbi.nlm.nih.gov/228...

There is a larger study ongoing in The Netherlands but Covid chucked a spanner in the works.

[Tcake2]

I was prescribed Leflunomide in June to try and lower my prednisolone dose. I have PMR and GCA and after a recent flare the pred had been increased from 6mg to 10mg. Within a few days of taking Leflunomide I found myself getting more and more exhausted. After a week I felt like a zombie dragging myself round. My rheumatologist asked me to stick with it but it didn’t improve. I found I was slurring my words, stumbling round I was scared of falling over my own feet. My blood pressure went up to 188/93 at which point I was told to stop taking it. Ten days later I am only now feeling more normal. Don’t know where I go from here. Hopefully you will fare better on it. All we can do is try it and see how we go on.

[Lizzery]

Hi, I’ve been taking leflunomide for around 10 years now, having been prescribed it as a means to reducing steroids. As it is I have only now been able to reduce to 2 1/2mg steroids. I did have ankle issues a few years ago, and thought the drug was the cause, however got orthotics which helped, and now ankles are fine. Then I had what I call ‘my little protests’ now and again when I thought it wasn’t working, however after a month of so of ‘protesting’, found it was needed. So my supposed 2 years of steroids is now into the 12th year, but I’m moving and pain free, so you can’t ask for much more.

[Caloo650 in reply to Lizzery]

Oh dear I was hoping to be off both drugs and be back to normal. I've been on Prednisone for 2 years and previously couldn't get down past 4.5. On 5 now getting ready to launch myself onto 4.5again and hoping leflunomide lets me get there. Anyway 2.5 is a low dose and pain free sounds marvellous. Thank you for sharing your experience

[Lizzery]

I’m sure you’ll be fine. I had never been able to get below 8mg, and although it’s taken a long time, at least I’ve been able to get to 2 1/2mg.

We’re all different, and as you’ve got to 5mg within 2 years hopefully leflunomide will enable you to get off the steroids completely.

Wishing you well.