Hi everyone

My name is Julia and a new member to the site, I have found it all very interesting and so good to know there are people there who really understand what you are going through - not just the downs up all the ups too !

I am 54, and was misdiagnosed for some months, hence being on steroids for quite a long time, well to cut it short I say my saviour ( consultant ) in early Feb, I had already been put on hydroxychloroquine early Jan and went on leflunomide beginning of Feb 20mg per day. I would be very interested to learn if anybody has thoughts on this drug. I couldn t take mtx due to an old lung condition ( still looking into that one ! )

Many thanks,

Julia x [biggrin]

Hi Carol

Thanks for your reply and your thoughts, tell Reddog I am very easy going and would be nice to hear from him - I don t bite !

Sorry to hear about your hip problem, what have you been put on now ? I ve gather the steroids give you a false sense of security, my rheumy doesn t really agree with them long term but I gather they all have different schools of thoughts.

Lovely hear from you and thanks for your support.

Julia x

Hi Julia, I have been on Leflunomide for a year now after 5 yrs of mtx & sulpha, I could only manage 10 mgs per day because of tummy ache &diarrohea +++ & have had to stop taking it now because of other side affects ie, exstreme weakness,itching tooth abscess so that Iam about to have my tooth out.I am fairly sure it caused the tooth problem as I had no gum or tooth pain before that. Having given you the worste news first,it was OK for about 3 mths ,so it got me through another year.I hope its really good for you, we all react differently to different drugs.I have a low tolerence to most drugs so hopefully you will be a lucky one. take care &good luck Rose

I've been on Leflunomide for 21months now, after "failing" on MTx.,hydroxywotsit, sulphadoodah and an interesting mix of all three........must say I am better on Leflunomide than anything else. Has anyone experienced difficulty in getting it, though/ I am still waiting for the last months' supply from a 3month script, this and Cozar (for BP) are on the "pharmacists selling them to other countries" list!!

Hi Julia,

....I've just been summoned to make an appearance on this forum! I've been on a combination of Methotrexate and Leflunomide for donkeys' years!! Actually 17+ years Mtx and 9+ years Leflunomide. I haven't had any side effects at all to speak of. Although I'm sure it increases my sex drive I certainly haven't had the s***s or the sweats!! . The MTX was working fine on its own for the first 7 years or so but then they had to bung in the Leflunomide. I think it's made a big difference. I've always been on 20mg per day. The only flea in the ointment is that my last blood test showed that my ALT level has shot up for some unexplained reason!!

If I can be of any further help, feel free to get hold of me!


Stewart.

Hi Julia

Welcome to the forum. Hope you will find lots of useful info on here and enjoy being a part of this lovely community

I was on Leflunomide for about 6 months after just about every other drug available failed but unfortunately the side effects were horrendous for me. I then went onto Infliximab but that lost its effectiveness after 12 months and I moved to Enbrel (along with MTX, prednisolone, naproxen and 5 other bits and pieces to keep things ticking!). That was a 'miracle' at first but unfortunately I think that too has passed its 'sell by date' ! Everyone reacts differently to the combinations of drugs and some are more effective than others. Even now it's often a case of trial and error until a suitable treatment is found.

Hope you have success with Leflunomide and you feel better for it.

Lyn x

Mandy has just been advised to go onto this drug. After reading side effects on http://en.wikipedia.org/wiki/Leflunomide
I am very nervous (indeed frightened for her)

Any reassurances would be welcome.

Hi John

Whilst Leflunomide wasn't for me it is generally a well tolerated drug with few side effects in most people. Indeed many people on this forum are currently taking the drug with a good deal of success. Drug companies, as you will appreciate, are required to list every known side effect and that is the frightening bit! In reality they are infrequent or mild. Sometimes a mild side effect, however annoying, can be tolerated more easily and is preferable to the nauseating pain and inflammation of RA.

Many of the drugs now used in RA are very toxic but a godsend for those who have moderate to severe disease. Side effects are an inevitable evil. I understand your concerns, as with any new treatment, but the drug will be given to Mandy in controlled conditions with regular blood tests and check ups. There really is no need for you to be frightened for her. Her suitability for Leflunomide will already have been considered and deemed necessary as the most appropriate drug for her condition at this time. When I took it, it was simply because it was the only drug available that I hadn't already tried, so no choice in the matter!

Good wishes to Mandy for success, hope it goes well for her,

Lyn x