Leflunomide

[trish29]

Could somebody advise me please ? Hi its trish 29 here and I have just started taking Leflunomide 20 mg this week after 10 years of PMR and many failed attempts to reduce steroids.. In this 10 years I have taken Methotrexate .. Azathiaprine ./ Salphasalazine / Amitriptyline but something usually sets off a flare and I have to start again .. I asked my consultant for this medication as I read up that Prof Gaspatu has a high success rate with it with his patients particularly the long time steroid users like me . My pain level is already slightly easier but I wondered when others taking this medication can advise when the best time is to take it as I take it with a meal about 5pm and find that I still toss and turn at night and I am waking in the morning very drugged up as though I am away with the faries and this takes until lunchtime or after I have an afternoon nap to clear, plus of course I get steroid euphoria .. Through flare-ups this year I have been back up to 18.05mg steroid but at the moment I am on 15mg but I need to drop another half mg in a few weeks .. I have a meeting with my GP next Thursday for a B/p check and to discuss this New Course of steroid reduction approved by my caring Rheumatologist. Any advice will be most welcome. trish29

[Celtic PMRGCAuk volunteer]

Hi Trish, you can get a leaflet on Leflunomide free of charge by ringing Arthritis Research UK on 0870 850 5000 (or I can bring one to the August meeting). Meanwhile, the advice is to take it at any time of day, with or without food. It is best taken at the same time each day. I'm so glad it's sounding promising in that you are already feeling less pain - long may that continue.

[trish29 in reply to Celtic]

Hi Celtic .. Thank you !! Its early days yet .. I have already got more fors than againsts but I am very giddy today . I now know why our kind Rheumatologist didn't want me to start it while on holiday , it appears to be helping my swollen feet and ankles as well .I have done a lot of reading up about it on my i-tablet .The only PMR problem I seem to be noticing on 14.05 mg steroid is I've got constant pain/ stiffness in my right shoulder/arm which came back after I was given my injection into the spine .so maybe I am on slightly lower steroid than I should be but I can cope with this compared to all the pain I have had this year and hopefully it means less painkillers.. Just 1 step at a time .. Perhaps I will take the tablet at Lunchtime ,I just didn't want it clashing with the steroids. I hope you are OK Celtic and I so want to be at the next meeting ..Judy has been in touch ..We had a wonderful holiday ..it was so good for me and we go back in September

Love trishxx

[suzy1959]

As I am on Leflunamide, I can tell you what I do. I take it in the morning along with the Pred.and other meds.It has taken about 6 months for it to begin to have an impact on my inflammation levels. I can't say that I feel any different per se, but I can be more confident now that when I reduce I am much less likely to have a flare. I have just gone down to 10.5 mgs Pred. and whenever I reduced previously, both Esr and CRP would go up. The steroids never reduced my ESR or CRP on their own. Currently my Esr is down to 2 (!) having been in the mid-twenties a lot of the time. CRP is still a bit high at 17 but has come down a bit from low 20's.

Are you still taking Amitriptyline? That is the one that helps me to sleep so I take it at 7:30pm and can feel a bit woozy in the morning. I read somewhere that you should take it 12 hours before you want to get up in the morning. I am currently experimenting with reducing the Amitriptyline from 35mgs to 25mgs because I am hating the dry mouth that I get with it and, because I am on a lower dose of Pred., my sleep isn't quite so affected.

[trish29]

Thank you Suzy for your reply !! No I am not on Amitriptilyne any more..I came off of it a while ago with the intention of starting Leflunomide .. I will try and take the new medication at Lunchtime to see how I get on with that. My problem has always been that I have a very sensitive stomach and I can also get frequent migraines but my B/ pressure tablets help that ..all the Best Suzy and your reply has given me hope ..I would love to have some more energy . best wishes. trish29

[Trenny]

For the record I take my 20mg Leflunomide about 5.30 before our evening meal at 6.00. I haven't noticed any problems and have been taking it for about 6 months. If i forget (I leave it by the kettle!) I take it later in the evening. I have GCA and have just got down to 11mg daily (the last 2 x 0.5mg by the slow method) - after 20 months. Before I took Leflunomide I had to keep uping the Pred. dose.

[trish29 in reply to Trenny]

Thank you Trenny for your Reply .. I'm so pleased that it is working for you .. I've had 10 years on this Rollercoaster ride and feel that as long as I can carry on taking this medication that this time around there is hope to reduce down on these steroids . I'm muzzy headed in the mornings but I hope that this gets better as time goes on . I have tried so many things in the past but have usually had to come off of whatever I was taking , Methotrexate affected my liver. Im not feeling wonderful now but I'm back on the Positive road .. Best wishes. trish29