have seen my rheumatoid consultant today and has told me to stop the methotrexate and start taking 10mg of Leflunomide a day as he says the methotrexate is not working as I had a flare 3weeks ago of the GCA what are your opinions on this new drug?
Went up to 30mg of steriods 3 weeks ago now down to 20mg due to go down to 15mg tomorrow then 1mg a month. he also said needs blood count liver function BP monitoring every 2 weeks for 2 months.
I have been on Leflunomide since January, initially on 10mgs which is a starting dose to check tolerance of it, and then on 20 mgs since April. I had previously been on Methotrexate for 6 months which did nothing for me. Although it apparently doesn't take as long to get into your system, I am still not sure if it is helping yet. My last blood test on 3rd June, has shown the lowest ESR I have ever had at 9 and a lowering CRP at 17 so I am still hopeful. I am due to see Prof. Dasgupta on 16th June and will see what he thinks about it then. I have not had any noticeable side-effects from it and it doesn't seem as if there are as many possible effects as there are with Methotrexate.
thank you for your reply sounds promising good luck with your appointment. so good to be able to talk to people having the same experiences!
Hi suzy .. Its very interesting to read your reply to vpankhurst about leflunomide. I see my Rheumy next week and hope he may agree to putting me on to this medication ..Can you tell me if you had any bad side effects on it ??..I haven't been able to take Methotrexate for a long time now as it affected my liver and other problems. I give up because I've had 1 thing after the other this year and seem to spend my days in tears at the moment ..I am stuck at home with awful sciatic pain on top of everything else but I'm having treatment at my osteopaths. Like a lot of others I've had it up to here with this awful condition. I haven't got the patience to go to my GPs Practice because they just don't want to know so its all down to my visit to my consultant next week .. Take care suzyx
Leflunomide seems to have less possible side effects than Methotrexate with which a lot of people feel nauseous( I didn't) and tired( I did about 2days after taking it) . There are still possible issues with the liver and kidneys which is why you need to have regular blood tests, but so far so good for me. Prof. Dasgupta told me that he gets very good results with it as a steroid sparing agent- saying 80-90% of his PMR patients are helped by it. I hope you can find some relief too.
I find myself referring to this condition as being like a game of snakes and ladders but there aren't any ladders ! I have had to go back to square one so many times, and every time I hope never to have to do that again, so that's where I am at the moment. I am going on holiday on Tuesday, so will not reduce from 12 mgs where I am at the moment until after I get back.
Thank you Suzy for your info on leflumonide .. I want to go on to this medication when I can .. I have had PMR for a Decade and I've just had enough ..When I was on Methotrexate I was with a different rheumatologist at a different Hospital and I now know that I was not looked after properly and my blood tests were not frequent enough. I was nauseous most of the time and lost about 4 stone in weight and here I am starting all over again because of one thing and another since February this year I have been sat on the bed in tears again this evening . Snakes and Ladders is a good name for this condition but there are so many who complete the journey and get off the steroids .. I wish you a Happy Holiday when you get there .. I hope to get back up to the River Lodge in Stratford - on- Avon in a months time but at the moment I can't even bare my foot to the ground with the sciatic pain.. I think you are wise about not reducing your steroid to you come back from your holiday. trish29 x
I feel the same everything seems to be going along quite well even got down to 11mg of steriods after going up and down for 18months then the flare up and back up again it is depressing and you think will it never end but I have decided to go along with it and not fight it and accept at this time it is part of my life which I have to deal with and really appreciate the good moments it could be so much worse. it helps being able to communicate with others in the same position and makes it less frightening. Have a great holiday!
Leflunomide is being used with greater frequency for PMR patients now as a steroid-sparing agent, although it is more commonly prescribed for RA patients (as is methotrexate).
There has been a very small trial in one of the northern hospitals, 23 PMR patients who were all either non-responsive to Pred or needed to stop Pred urgently and all did well on it (possibly 1 dropped out).
The monitoring is similar to that of MTX and should be followed correctly - that way any problems will be caught early on. I'm a little dubious about the Pred reductions in the later stages, do you have a follow-up appointment at all? It looks a little ambitious.
I have a follow up appointment with him in 4 months but in the meantime my doctor is left to monitor it
Newby seeks advice: what to do next after failed course of prednisone to treat PMR?
GCA tapering
Methotrexate
Sudden bursts of heat and nausea
