Any advice on taking Leflunomide.. I have never taken this medication in the past and I will be taking it in a month or so's time.

[trish29]

Can anyone give me any advice with their experiences with this medication. I took Methotrexate a few years ago and eventually it affected my liver but I really need to try something else again to get off these steroids . My Rheumatologist has agreed to this but I have to wait to start it as i have to have an injection by x/ray first into my savioliac joints and I have had a top up of Depo- Medrone into left buttock to help sciatica/bursitis.. Its all happening but I have been housebound for a while now so I'm willing to try anything . Thank goodness I have got a Rheumatologist that listens. Maybe ..just Maybe there is a chance I might be able to get out and about again.. I can't even get on my mobility scooter at the moment .. Its been awful , trish29

[suzy1959]

I am sorry to hear what a battle you are in. I tried methotrexate last year with no beneficial effect. The only side-effect I got then was tiredness. I have been on Leflunomide since January, initially on a starting dose to test my tolerance of it (10mgs) which was good and then onto 20mgs since the end of March. It is only in the past few weeks that my CRP has started to come down (17 from 21) but my ESR has come down a lot ( 9 from 21). My markers have never been in the normal range until now, since starting this whole thing 2.5 years ago. I thought this might be an indication that the Leflunomide is beginning to work and that was confirmed by Prof. Dasgupta when I saw him last week. He said it is still early days and the Leflunomide will continue to help more and more. He still urged me to reduce by only 0.5 per fortnight. But, I should be able to avoid any more flares,hopefully! With Leflunomide you still need the regular blood tests and it still takes a long time to get into your system and make a difference, but it doesn't seem to have as many side-effects and Dasgupta uses it a lot for his PMR patients. So it is thumbs up from me!

[iforget]

I was prescribed this drug for another condition (not PMR) but I couldn't tolerate it at all and experienced horrendous GI problems... and while it can take ages to work properly, it takes even longer to exit your system so I ended up needing other drugs to get rid of it faster. That was one of the most unpleasant experiences ever...

but that said I know of lots of people who have been on Arava for years with no problems...

Everyone is different and unfortunately you have to try it to see if it works for you...I wish you luck.

[Trenny]

Like Suzy, I have been on Leflunomide since January. I wasn't pleased to be given yet another tablet. After three months on 10mg, my rheumy upped it to 20 mg, saying that this was the proper dose. To date I haven't noticed any side effects. I have got the Pred. down to 11.5 and am just starting to reduce to 10.5mg daily by the slow reduction method. I have a blood test every one or two months for CRP and to check liver function, I believe.

[Trenny in reply to Trenny]

For the record, what blood tests should I ask for to check kidney function?

[Hidden in reply to Trenny]

U&E's ( urea and electrolytes ) is the blood test that checks kidney function.

[trish29]

Thank you everyone for your replies , its so nice to get information from other members on the Forum .. When the time comes for me to start Leflunomide I will hope that it helps to get me back on track with my life . I wish you all well . trish29