Hi,new to the site just wondering if anyone has experience of leflunomide? How long was it before any side effects started? I have been taking it for 6 days and no noticeable side effects as yet.

Hi Milo, welcome. I took Leflunomide for around 18 months and as best I can recall it was around the 6th or 7th week that I began to notice an improvement in my symptoms, less morning stiffness and less foot and shoulder pain, and that was on a 10mg daily dose.

I had about three really good months at that dose and then it needed increasing 10mg/20mg alternate days at which point I started getting side effects and it seems to lose more and more effectiveness as time went on. My side effects were body rashes/itching, migraine, increased blood pressure and peripheral neuropathy in my forearms.

Make sure you go for your monthly blood tests and keep a note of anything you think is unusual for you or a definite side effect (even if you can tolerate them) so that you remember to report it to your rheumy team. My rash/itching and loss of sensation in my arms got blown off as unconnected because they started up quite late into treatment but I now know that Leflunomide should have been stopped much sooner ..... I'm only starting to get the feeling back in my forearms now after nine months and I'm very lucky it is coming back, it can be permanent if the nerves are sufficiently damaged.

Wishing you every success with your treatment.

Hi,thank you for the reply. I started on 20mg tablets I am not expecting any improvements for a few weeks. I just hope that the side effects ain’t to bad. 6 days in and all well,just hoping it stays that way. I was on methotrexate which works well but I kept getting yeast infections on my skin. Hopefully this will not happen with these. If it does I will be back on the methotrexate.

Hi, Milo! Good question about leflunomide. I took it (after trying all the other DMARDs) for a few months and got a minimal bit of help from it, and no side effects (except for those I suffered because I had to become a tee-totaller while on it!) I was switched to a biologic, and that, fortunately, helped.

You asked this question on the Cuppa House group, so it will have been seen only by our UK members. You might want to re-post the question on the larger forum, which you access through DISCUSSION in the green band above. You might also try the search feature of the site, which is nearly invisible at the top right of the page. That should give you a bit more information than posting here.