Hello all!

I met my rheumatologist yesterday and really like him.

He started me on 20mg of Leflunomide. I don't see that medication very often on the board. Does anyone else take it?

He also gave me 15 days of prednisone (15mg for 5 days, then 10mg, then 5mg). I felt really good early today with the prednisone but guess it was short lived because now I'm tired and achy this afternoon.

He said he wants to give the Leflunomide 3 months to see if it is going to work.

It's a little depressing to think this is basically how I'll be feeling for the foreseeable future but I suppose it is what it is and I'll need to adjust, mentally.

35 Replies

  • Hi I just googled that drug and it sounds very similar to Methotrexate which is what I'm on. My Rheumy took me off Prednisone and put me on Plaquenil which has stopped the bad flareups but doesn't have the same sort of bad side effects. Good luck 😄

  • Thanks! He said I could take methotrexate or this. I told him whichever one he thought. He said this, so that's what I did.

    So you take both methotrexate and plaquenil? I didn't know you could take both. The prednisone was great for a few hours.

  • Yeah the Plaquenil replaces the Prednisone which is as you know a steroid . It works very well

  • Hi,

    Yes, I take it along with Salfazalazine. I haven't had any bad side effects from it and the combination has been working pretty well for me.

    Hope it brings you some relief. ☺

  • Thank you 😊 I hope it starts helping sooner rather then later!

  • Don't get hooked on Prednisoline....read on here how difficult it is to get off.

  • He only gave me 15 days worth. 15, 10, then 5mg. Hopefully that's not too much?

  • Hi I've been on leflunomide for years, its changed the arthritis from being really bad to flares of the odd occasion now. Yes you do still get flares and painful joints but I haven't had them on the scale I was on in the beginning to now. It takes a while to work so bear with it if you can.

    Its been the only mediation I've been able to take.

    Good luck


  • That's really good to know! I had never heard of it before the rhuemy mentioned trying it.

  • It is also known as Arava

  • I has it for 6 months. Didnt make any difference. I have PsA. Rheumo took me off it in May when my liver results showed some impairment. It may have been the Leflunomide or could have been my long term use of antibiotics and other conditions that caused liver problems. Now on Otezla for PsA

  • Yes I take it, alongside with 25mg MTX and 200 Hydroxy. I'm down to 7.5 Pred from 10 (go me!) and I also inject with Benapali once a week.

    I wouldn't say my RA is under control as I still get flares and infections and then have to stop all drugs and so it goes on!

    Even with this absolute cocktail my feet still hurt 🙁

  • Well done cutting down on the Pred!

  • I tryed leflounaid but unfortunately i got very bad headache and pain was stronger than usual. So I stopped and i am back in sulfasalazine. Depends of person...

  • I was put on that drug by the specialist nurse last year. As it happened I was seeing the consultant a couple of weeks later and he took me straight off it as my blood pressure was going through the roof. Still suffering with the blood pressure as it can stay in your system for up to a year. My BP had always been fine up to then. Please keep a regular check if you can on your BP. I am also aware of other people who had problems with it as well. It was the last drug offered having been on the usual route of these drugs. I am now on a biological drug Rituximab which seems for me to work. I hope the drug works for you but just be aware x

  • I've also just been given a 10mg dose prescription to go on top of my 12.5mg mtx. They've also started to take away my prednisolone which is sad!

  • Leflunamide does seem to work well for some people but quite a lot of people on this for forum have reported having to give it up...me included. It made my neurological symptoms worse.

    So be vigilant, as with any medication....they all have side effects and as ever it's a balancing act between the benefits and the harms!

  • Here is the 2015 NICE guideline: In people with newly diagnosed active RA, offer a combination of DMARDs (including methotrexate and at least one other DMARD, plus short-term glucocorticoids) as first-line treatment as soon as possible, ideally within 3 months of the onset of persistent symptoms. [2009]

    So my reading of this is that if you are in the U.K. he shouldn't really having been giving you a choice of whether to have MTX but offering MTX plus one other DMARD eg Leflunamide....but he's obviously using his clinical judgement to inform his decision making, or maybe you live elsewhere, or if he's elderly maybe he doesn't keep up with NICE guidelines!

    Again, from what people report here, those in the U.K. do seem to be offered MTX initially.

  • I read your post with interest as I too am on a cocktail if leflunomide, hydroxychloroquine and sulfasalazine. Overall it's working well for me but I've had noticeable hearing loss on one side and the audiology department say it's possibly due to damage to the nerve endings in my inner ear which may/may not be as a result of the drugs. Has anyone else suffered with any form of hearing loss that can be linked to RA drugs? I'm curious and still need to go in and talk to my rheumy about it. Very frustrating.

  • I can't say I have on any of the RA meds but if I have needed ibuprofen in the past (it kept me going when so many meds failed and I was changing to different ones) I would get ringing and buzzing in my ears just after taking them. Fortunately I don't need the ibuprofen any more and haven't for a few years now. Apparently tinnitus type symptoms are common with ibuprofen.

  • I just wish I had ignored my GP's advice and come off the LFN much sooner as I noticed problems almost immediately.

    I stayed on it for about 6 weeks. But my problems were connected with the peripheral neuropathy I have.

    The doctors talk about neurotic patients but I call it vigilant observation! It's our bodies and we have to live with the consequences.

  • Absolutely vigilent and not neurotic! You would not be mentioning these things if they weren't troublesome/concerning you.

  • I have been on leflumide for nine months now. At first I had hair loss but nothing you could see but I do have numb feet which the drs just look at them and say what it is and that's that nothing to say what causes it. I also have blotches all over my legs caused I am told by steroids I take 5mg prednisone. It looks very unsightly. Besides having r a I also have rheumatoid fibrosis, osteoporosis in my hips which is were most of my pain comes from and it makes for difficult walking. But I consider myself lucky I am 80 and there are people worse of then me. So good luck with leflumide I hope it works for you. Sophie17

  • Hi

    I've been on that drug for eight years along with methotrexate and Hydroxy no side affects from it but RA still very active xx

  • Elli .. I battled on with MTX and Arava for about five years when they started to wane and not be as effective. Steroid shots propped me up then my rheumy insisted I had to try a biologic. She said it was "friendly bullying" on her part and kept asking me to try a biologic injection. Are you not able to try something else given you've been on your meds a long time and still have active RA? I was a real difficult patient a few years ago, I admit .. Scared of biologics then I realised I had to try something else. I hope your RA calms and settles. X

  • I take Leflunomide with Methotrexate. You will be advised to have a blood test every 4-6 weeks. If you are on shared care (hospital + GP) your GP surgery can do your blood tests but you can also have them taken at the hospital. Prednisolone will be a stop gap until Leflunomide (also known as Arava) kicks in, but don't rely on it too often as it can cause Osteoporosis.

  • I'm prescribed leflunomide, double therapy with methotrexate. I'm not too sure it's helping but then again I've no side effects that I'm sure of.

    It's not usual to be given a short course of steroids at the start of treatment, to relieve symptoms. Steroids work on the inflammation & pain whilst your DMARD (LEF) has chance to work. I was given a month's worth alongside hydroxychloroquine (my first DMARD) & a couple of NSAID's, one to take daily & the other to take if the pain was too much. As you've only been given a short course & reducing rapidly you won't have any problems, your body won't have become reliant on them in that short a space in time. The concern is for longer term use, steroids take over the normal production so in effect it's turned off & your body needs to start doing the job itself again so to avoid adrenal shock you need to taper slowly over a longer period.

    I hope LEF works for you but if but doesn't you know your Rheumy has options he can prescribe, maybe MTX. Either way at least you've started treatment & hopefully on the road to tackling the disease.

  • Thank you! I didn't know that about prednisone. Maybe he's trying to avoid complications from prednisone by just giving me 15 days? I don't know. He's still doing blood work and my UA was wonky yesterday, I'm going to be calling this morning since they haven't called me yet on it (I saw it in my patient portal last night).

  • You're welcome. Yes, that's probably right, any longer than 3-4 weeks on steroids & you'd need to taper for longer. Just noting Ellieellie's reply, I omitted to say LEF can affect your blood pressure, it did mine in the early weeks & it was previously bob on. It's back to normal now but it's still taken to ensure all's well but something to bear in mind when you have your drug monitoring blood tests, request it's taken.

  • Yes, I forgot about it affecting blood pressure too! Don't know how, I'm on 2 different pills for it.

  • Thank you all so much!!! You are a godsend here of information. He did tell me Methotrexate is the gold standard for initial treatment of RA but he said this is also considered a first line treatment and I let him pick. He said he will switch me after 3 months if it isn't working. I have blood tests set up every 6 weeks.

    I'm curious, the ones that said RA is still active but still on this and metho, why haven't the doctors moved to a biologic? I had assumed once this didn't work or if it doesn't work, that eventually we would be moving to one of the biologics.

    Thank you all again, you make everything less scary :)

  • LEF is my fourth DMARD, no biologics for me! Truth be told against my better judgement & despite me complaining about it I've been on low dose steroids for 5 years. I tried to taper off them three years ago & flared so had to start them again. My Rheumy then went on extended leave & nobody would ok me coming off them again without her say so. Anyway I'm waiting for a taper plan from my (overdue) nurse appointment so we'll see how well LEF works then I suppose. Can't increase MTX so it's sort of last chance saloon, will I be considered for biologics, not holding my breath. 😔

  • I take it, its great but takes a fair while to work- like 12 to14 weeks! For me, it did have one side effect the RA hurt worse for about a week after several weeks of taking it. But I persevered and am now in remission. I would not know I have RA if it was not for that pill. I do take at night and its never made me feel sick or anything else. Love it !!

  • That's wonderful!! Thanks for the heads up on the worsening pain for a few weeks.

  • Paracetamol and heat pack eased it a lot. This stuff works well for me. MTX caused me huge hair loss but LEF is fine no loss at all. The pain does last just a few days but it was bad. So worth going through for the relief it then gave. I had a steroid jab no other medication at all. Blood tests every couple of months now and no issues at all.

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