I am starting leflunomide this week. Took mtxt but
hated the way I felt. Is it for PMR or RA or both?
Any info would be appreciated.
My rheumatologist has suggested this for me too. Also interested to hear how others have got on with it. What does it actually do??
As I understand it, it will decrease inflammation and allow withdrawal from pred.
Leflunomide is what is termed a DMARD - a Disease Modifying AntiRheumatic Drug - which has an influence on the disease process in RA and helps prevent the damage to the joints that is typical in RA.
In PMR is is thought by some doctors to act as a steroid sparer. That means they believe it potentiates the effect of the pred so that you get a better result for given dose so you may be able to take less pred. There are a few drugs that are claimed to do that, methotrexate, azathioprine and plaquenil are others. The evidence is mixed - there were 3 studies for mtx, each came up with a different result! There was one poor study for plaquenil that said it didn't help and one study that I know of for leflunomide. There are some doctors who say they do work - or at least, they press patients to take them.
The leflunomide study was done with 23 patients, 1 dropped out because after several weeks she was so ill she couldn't carry on. Of the other 22, some got full remission of their PMR and the others partial remission - I have no idea what partial remission means, I assume they got to a fairly low dose of pred. Many people do anyway. There was no long term follow up in the report I read - i.e. I don't know how long the patients remained in remission once they stopped the study or if they had to continue taking both drugs, I imagine some got off pred altogether and even stopped the leflunomide as well.
I know a few patients who have taken leflunomide - and the results are mixed. One became seriously ill with side effects and had to stop. Others have taken it and had no real difference and I think one finds it helps (she thinks). One friend takes mtx - has no problems with it at all and is sure it allows her to take a lower dose of pred. Others found it made them feel too ill. One takes azathioprine and it definitely helped her symptoms because they were far worse when she had to stop it over xmas last year - but now her diagnosis is being changed from PMR/GCA to ankylosing spondylits, a form of inflammatory arthritis - of course a DMARD would make a difference. And that is what I suspect: when these drugs do help it is because either it isn't PMR the person has or not just PMR. There is no definitive test that says "This is PMR, nothing else" so who knows.
All that said, one of the few rheumies I have come across in the PMR/GCA field who I would trust implicitly says the only DMARD he thinks is worth trying is leflunomide.
However - there is no guarantee that you will manage without some pred - unless you are lucky. If you feel OK on any of them then maybe they are worth trying - but it adds in another layer of side effects and limitations (no alcohol usually being one).