Leflunomide pain getting worse

Hi all. They'd changed my meds from Mtx to Leflunomide. Have been taking it now for 7 weeks, but the pain seems to be getting worse. My hands and feet are so swollen and painful. Should the meds not be beginning to work by now? I am also taking Celebrex, and have recently been told I also have Fybromyalgia . Anyone out there that can advise. Xxx

14 Replies

  • Really for you you need to see your gp or contact rheumy dept .You sound just like me , stopped mtx 13 weeks ago for Leflunomide & like you have felt no benefit had several flares saw consultant tues who said she thinks I've got fibromyalgia as well , I've not slept 2 nights due to pain and my blood pressure is up , apparently it takes 12 weeks or more to kick in but I'm not convinced it's going to benefit me . Have you had bloods and Blood pressure checked I hadn't had Blood pressure checked and chemist did it Thursday and was sky high .whens your next appointment ? Unfortunately it seems we have to try different meds till we find the one that suits us hope you feel better soon I know when we start a new med we hope it's going to work like magic IF ONLY see how you go next few weeks take care cyber hugs x

  • Hi Felicity, yes I am exactly the same as you. For the first 4 weeks had my bloods and bp done. BP was slightly raised, theey referred me to my own Gp, who did not think it w a s anything to worry about, but advised me to monitor my own bp and work out an average then give them a call, not very helpful. What dosage of Leflunomide r u on, I'm on 10mg which I am wondering if that is enough. Not due to see rheumy until mid June. Xx

  • I'm same 10mg , also on hydrox & sulphalazine . That's a good tip to monitor own BP Will get bp machine ASAP . Things change so quickly with RA different meds and symptoms change day to day . I'm learning so much from this wonderful site , had so much support from you guys really appreciated . Hope you get things sorted megan2005 x

  • Hope things get better for you too. I have decided to contact my rheumy nurse tomorrow, to see if she can offer any advice. But I suspect the answer will be , I haven't given the meds long enough. If I learn anything new about Lefluonamide or anything else I will certainly let u know. Good Luck and lots of hugs. Xx

  • Hello Megan. I took methotrexate for two years, which worked well, but had awful side effects. I then started leflunomide instead, and like you suffered a flare up. I don't know if it caused the flare up or whether it just didn't help. I stopped after about two months, and got my rheumatology dept. to bring my appointment forward. The specialist took one look at my feet and knees, and put me forward for anti-tnf treatment. I was given a steroid shot to tide me over while the paperwork went through, and that made me feel fantastic, but soon wore off. It sounds as though you should be eligible for anti-tnf treatment. You need to have failed with two dmards, including mtx, and have at least four joints inflamed. I'm currently on Enbrel, and it's helping. These are new and expensive wonder drugs, and hospitals are careful about prescribing them due to the cost. I would speak to your rheumatologist.

  • Hi Roy. Thank you for your reply. Like you Mtx worked for me also, but the side effects were horrendous. I am going to contact ny theming nurse tomorrow to see if I can get my appointment brought forward. I cannot go on like this, out of the 7 weeks I have been taking Leflunomide I have had one relatively good day . What exactly is anti-tnf treatment by the way, I read of people on it on this forum but don't know exactly what it is, also is enbrel a NSAID. X

  • Hi Megan. I'm pretty new to this treatment, so my advice is only from personal experience. I find that arthritis is treated first with anti-inflammatories (nsaids like you say). In my case this was naproxen, which didn't work. Then it moves to disease modifying anti-rheumatic drugs like methotrexate, leflunomide and sulphasalazine. These work well for lots of people, so it's not like the docs start you off on the light stuff - these are powerful drugs. However, if these don't work, or you can't tolerate them, the next treatment available is biologic drugs (anti tumour necrosis factor drugs). These work a bit differently, and need to be self-injected (which sounds horrible, but is actually no big deal). They work to suppress an over-active immune system which causes the problems, but the actual way they do this is beyond me. So it's like the third level of treatment. I've just started this level, and I needed to satisfy certain criteria before they would give it to me. If you can't tolerate mtx, and leflunomide isn't working, like with me, then I would think this the next step. Hospitals are reluctant to take things to the third level, because of the cost, before they are convinced that other (cheaper but not necessarily less effective) treatments have failed. Enbrel is one of several anti-tnf drugs: Humira is another. Hope this helps - keep on at your rheumatology dept. if you feel the drugs aren't working. There's no reason for you to be suffering so much.

  • Hi Roy. Thanks so much for explaining this to me, it has given me a lot clearer understanding and I can be fully prepared when I go to see my rheumy. Good Luck to you and hope everything goes well. X

  • Hi Megan! I have also been on Leuflonimide for 7 weeks and like you the pain and swelling seems to be getting worse. I was previously on MTX which worked fantastically on the RA but My liver levels rocketed so I had to come off it. I am going for my fortnightly bloods and BP check this morning, liver function levels still high last time so wondering if they are going to improve. I am going to see my GP about the pain and swelling because I am not happy this drug is helping me!

  • Hi Chanel47, thanks for it reply. I have tried to speak to my GP about this, but they just keep referring me back to my rheumy, it's horrible , just feel as though I am being fobbed off all the time, but this time I am ready for battle with them. X

  • Hi megan have a look at the NRAS web site , it's got great info on all the drugs and other useful stuff too , they also can send you very good booklets by post , I have changed from MTX to leflunomide and I am no better either ,waiting to see if I can get anti TNF treatment now , it's a long and frustrating road getting drug that works for you , hope you get some relief soon x

  • Hi Julie. Thanks for reply, will definitely look on NRAS site, need to get as much info as possible before I see my Rheumy. Good Luck to you. X

  • I have been on Mtx, sulphasalazine, and am now 3 weeks into leflunomide. As I was still suffering they put me back on steroids. I go to my long awaited rheumy app on Thursday, and look forward (lol!) to what they will say now. Previously I was on steroids and it took me 3 years to get off them. 6 months later and I am back on them! At least I have some pain free time before they tell me to come off them. Anne

  • Hi Anne, it's just a horrible vicious circle isn't it. Wouldn't it be wonderful if there was one miracle drug that suited everyone! Good Luck to you. X

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