Leflunomide ....not for me

So I've been on Leflunomide since early April and I can safely say I may as well be drinking water for my RA. My pain was already quite bad along with increasing side effects of nausea, fatigue and hairloss when my rheumatologist suggested lowering the dose to 15mg.

Since lowering my dose the nausea has gone but I'm permanently hungry and my weight is going up :-( The hairloss has decreased and the fatigue has gone but unfortunately the pain and stiffness has steadily increased. The worst pain is in my arms from the outer shoulders running down past the elbows. Its like a deep hot ache which throbs like a blood pressure cuff is tight around my arms. I'm hardly getting any sleep as it wakes me constantly throughout the night, I struggle to turn over as the pain is so bad. Last night I eventually got up at 3am and sat tearfully in the kitchen making a cup of tea and wondering if the leflunomide would finish me off if I hit the booze to ease the pain. To be honest a few glasses of wine would probably be more effective and help me sleep!

This morning I've spoken to my specialist nurse who suggested increasing back to 20mg but I declined as at the risk of sounding vain I really can't live through my hair falling out again. She suggested I try sulfasalazine and assured me that although I'm sensitive to aspirin this shouldn't make any difference. So she's faxing a script to my GP for sulfasalazine and a steroid jab and I hope with all my heart that this drug works. It seems to be a very long time since I was pain free and I'm really feeling depressed by it all. I'd love to get back to my swimming and gym but at the moment I just can't find the energy.

Feeling pretty deflated at the moment but hopefully the new drug will help and my next post will be more positive. x

29 Replies

  • Paula I am so sad to hear this really I am ...to be honest I really think it's time they consider a biologic for you - the guide lines are that you can be considered if flares , pain fatigue and certainly 2 failed dmards and that is you !!! You've tried them Paula and they have not worked for you and you cannot go on like this ...please please push your point and speak to your rhumi team about biologics ... I know how determined you are about weight and fitness and feel sad that really you are not able to control this because of continued ill health - please keep me updated thinking of you love Claire x

  • Hi Claire, it's so good to hear from you again and I hope you're doing well? You're so right about the weight and fitness having a big impact as I've worked so hard to lose weight. In truth I would be happier to first give the sulfa a try before going for the next step in treatment. My specialist nurse was going to add sulfa to my leflunomide but I asked if I could just try the sulfa on its own first and then add in the leflunomide at a later date if it doesn't do the trick. I'll be interested to see if the awful arm pain I've been experiencing is indeed down to the RA or maybe an unwelcome side effect of the leflunomide. These drugs can have so many strange effects it's hard to differentiate in the end. Anyway I took my first pill last night and am now waiting to see what new and wonderful side effects are waiting in the wings!

    Did you manage to get back into work? Unfortunately the fatigue has meant I didn't have the energy to take part so I don't know how everyone has been doing. x

  • Hi Paula let's hope the Sulphasalazine helps you I really hope it does please keep us updated .... Yes I have just been accepted for a job local to me in admin just Thurs n Fri 9-3pm it was hard getting it and heavy interviews but I did and I start soon ....but Paula this is only down to the fact that I'm on a biologic so please try and discuss this if all else fails (hopefully not) with your consultant and be assertive and make them spend time with you - you are important and so is your health ! Take care Paula lots of love x

  • Hi Paula , sorry to read you are suffering so much, I'm in a very similar position to you at the moment. I agree with Claire you should really try to push for the next stage of meds but hopefully a steroid jab and adding Sulfa may do the trick. Have you had a steroid jab before? Best wishes and hope you feel better soon.:)

  • Hi Kiki, yes I've had steroid jabs a few times and found them brilliant. My nurse said she'd add a steroid to my prescription and send it to my GP to do. Unfortunately I got a message from my GP's office last night to say he wasn't happy to give it and needed to talk to my consultant first. I hope he has more luck with that than I do! Thanks so much for your best wishes :-) I hope you're well too x

  • Hi Paula - I'm so sorry to learn this - you poor thing. I've just stopped MTX for the 3rd time because of side effects having not tolerated Sulfa or Hydroxy. I know my rheumy will be offering me Leflunomide but I dread it as the MTX has made me very sick with the runs and I just can't bear the thought of any more tummy or skin trouble with this, my fourth DMARD. Unlike you I'm not in much pain currently so I really agree with the others that you should, and hopefully will be offered Biologics and even more hopefully get your life as you want and need it, back. That is if the Sulfa doesn't work its magic on you and you can't tolerate it well. Twitchy x

  • Hi Twitchy x x Sorry we've not spoken in a while and sorry to hear you're off mtx again. It's good to hear you're not in pain though, long may it continue! I'll definitely be pushing for biologics if the sulfa fails to help. I don't know how long it would take to become eligible though as my esr appears to stay low at the moment even though the pain is awful. I'm due to see my rheumy again in October so I'll have a good idea how things are going by then. I'm currently having a big think about my ability to keep working as I'm finding it so difficult. My last shift is on Sunday and then I'm having a 2wk holiday. This will give me time to think and hopefully reach a decision. Andy says I should just leave but I like to have my independence and my own income, even if it is only £80 a week. I hope you get on better than I did with the leflunomide as it's about time you got a break too x

  • Paula this has made me feel more committed to staying off MTX and not succumbing to pressure to try Leflunomide. I have a stupidly high pain threshold but I do find I get very unwell when off DMARDs - although I get very unwell so far when I'm on them too LOL!

    Six weeks ago my ESR was 62 and CRP 36 and yet I was sure I was fine. Then I realised that the ache in my shoulder and the sore knees must be RD but they weren't excruciating enough to let me know so I just assumed I had been lying in a draft or had pulled muscles etc. however I have a pathetically low tolerance for feeling sick, foul tastes, the runs and stomach and skin problems that others will put up with stoically in order to keep the disease at bay. Its a no win situation so I'm yet again at square one. I really hope you qualify for biologics if they can help you. I kind of hope I don't because I'm researching alternatives just now as feel im so allergic to all these pharma products that I need to learn as much as I can about the immune system, vitamin deficiencies etc so that I can maybe keep the disease controlled this way instead. If I get anywhere I will let you know but meanwhile best of luck to you. I think you should see how you feel about work after your two week break. It would be lousy to give it up only to find a miraculous break through a new drug that really works wouldn't it? Xx

  • Can you please tell me what the problems were with leflumide as I get urine infections every time I go back on it an also did it help you any. Thanks

  • I was taken off leflunomide yesterday as I had never stopped having problems with diahorea that was my 3rd failed DMARD I will be prescribed biologic of my inflammatory rate is high enough on my next blood test. Never have I hoped for continued pain so badly.

    Good luck, and I hope you find some relief x

  • Hi, isn't it awful that we have to pray for extreme pain and inflammation in order to qualify for the drugs we need. Yes the leflunomide has some rather unpleasant effects on the bowels. I was becoming increasingly frequent and would be worried when out walking as the "urgency" struck. So at the risk of sounding mean I wish you luck and inflammation so you can get your biologic therapy x x

  • Thank you Pauly. My consultant was positive it would be, but life is rarely so kind/ cruel, whichever way you look at it.

  • Oh Paula, I do feel for you. That sort of pain is so awful & you just don't know what to do with yourself. I've not had leflunomide or sulfasalazine but can relate to how you're feeling just now nonetheless & have cried in frustration myself on more than one occasion. Stating the bl**ding obvious here but not sleeping won't help your mood & you'll be feeling even worse as a result of that. Do you think your GP would prescribe you something to get you over this period of finding something that will work? I resist sleeping meds like crazy & am a bit proud of myself that I've never taken them except once when after an op in hospital but I do have amitriptylene to go to when things get too much & just take 10mg to relax my muscles enough to let me rest at night as I tense up when in pain & I'm miserable otherwise without restful sleep.

    I do hope that something, whatever it is, will work for you & if you feel so grot again any time just get yourself on here girl & shout it out, maybe it'll help if the effort isn't too much. x

  • Thanks for the suggestion of something to get me through the night as to be honest it hadn't even crossed my mind. I'll get in to see my GP next week to discuss....if I can get an appointment! I find the community on here are the loveliest most caring people who have helped me through some very dark times over the past couple of years. I feel bad that I've not been around more but unfortunately it's been a side effect of the fatigue I've been feeling. I'm sure my husband will appreciate a rest from my RA talk now I'm back on here :-) x

  • So sorry to hear that led hadn't worked for you and that you've been suffering. Keeping fingers crossed that the next meds will sort things out for you.


  • Thanks Caroline, first dose taken last night. I hope you're well too x

  • Am doing really well at the moment, thanks. The 'r' word was mentioned at last appointment. Trying to enjoy it while it lasts.

  • Hi Paula

    Hope things seem a little better today. It is so frustrating isn't it? We build our hopes up that we are going to find the right drug regime for us then feel deflated when we realise that we haven't found our " miracle" drug.

    Not sure what state I'd be in without steroid injections .....I've had several general ones which work well for a few weeks, and ones directly into my shoulder joints....uncomfortable at the time, but am hoping for longer relief from them.....forever would be good!

    I'm on mtx and leflunomide and next step once I've passed 6 months on leflunomide will be biologics.( assuming a miracle doesn't occur in the next few weeks!) I've been relatively ok with side effects which is good, but only good if the drugs are actually working!

    Not sure if the 6 months applies to each Dmard or just in my area but you may want to ask about the criteria for biologics just so you know what the overall plan is.

    I hope the steroid injection gives you some relief and let's you get some sleep....if they offer injections into the shoulder joints then I have found the steroid " whizzes" around everywhere else and mops up any other niggles you have.

    Good luck x

  • Hi Beaches, good suggestion to find out about the biologic criteria. To tell the truth I'd never even considered biologics as I always think they're something taken by people much worse off than myself. Then I consider how much life has changed and how little I can do now compared to a year ago and it makes me realise it's time for a rethink. I don't know about anyone else on here but I find the lack of time at medical appointments makes it very difficult to be heard. My GP seems to have no interest in anything rheumatoid related apart from dishing out the prescribed meds. My last consultant appointment lasted all of 5 minutes and all I came away with was a reduction in dose and the distinct feeling that nobody was listening to me. Thanks so much for the advice x

  • Hi Paula, I've found the NICE guidelines on criteria for starting biologic drugs here on the NRAS website: nras.org.uk/anti-tnfa-treat.... Here it is in full:

    NICE Guidelines

    The National Institute for Clinical Excellence (www.nice.org.uk) has assessed and approved the use of these TNFα inhibitors to treat patients with rheumatoid arthritis in accordance with the British Society for Rheumatology guidelines. As these drugs are very expensive, NICE have looked at the cost versus the effectiveness of the drugs, and though they have approved them, patients need to meet the following criteria to be deemed eligible to start anti-TNF treatment:

    1. The patient must have tried at least 2 of the standard DMARDs (such as methotrexate, sulfasalazine, hydroxychloroquine and leflunomide) and one of these must be methotrexate.

    2. The level of disease (measured using an assessment called ‘disease activity score’ or ‘DAS’) should be above 5.1 on two occasions, one month apart. DAS is calculated by a combination of factors, including assessing 28 joints to see if they are swollen/tender and looking at the levels of inflammation showing up in your blood. (click here for more information on DAS).

    I've also found that my GP has a hands-off approach to anything relating to RD (he said he focused on my emotional health, the rheumy focused on my physical health!), so now I just call the specialist nurse if I have any problems. Good luck with starting Sulfasalazine. You could also try calling your rheumatologist's PA and ask if you could bring your next appointment forward urgently? This is what I did when I'd failed 3 DMARDs and was desperate to start anti-TNF treatment. (I'd resisted starting new meds for 7 months because of previous reactions & side-effects but then got desperate). My DAS was 6.1. At that stage I couldn't face waiting for the next routine appointment as could feel myself getting worse. Good luck with it all & hope you start to feel better soon x

  • Thanks for that Francherry. I'm really hoping that the sulfasalazine will help me so want to give it a fair try first. Unfortunately after taking my first dose on Friday I woke up with a painful throat. I took my 2nd dose Saturday and my throat became worse and turned septic by Sunday night. Spent the evening in the out of hours clinic and am now on penicillin for 10 days. My specialist nurse has advised me to stay off the sulfasalazine until I've finished the penicillin and then try again :-( I'm hoping the throat is just a coincidence but he said we can't rule out a link until I try again. Also I can't have my much needed steroid now as he advised that this could "feed" the bug. x

  • Hello, I'm sorry to hear about your throat and having to take penicillin. How frustrating. Good luck for the second try and keep us posted x

  • Hello everyone! I have been on leflunomide for about 1 year now and it has been for me the best DMARD as I couldn't take neither sulphasalasine or methotrexate. For pain and loose bowel I take codeine. Only one cocodamal and 2 paracetamol at night and it helps a lot on both count. I don't take codeine during the day. I also take gabapentin because I have spinal stenosis. With this, that's the best I have ever been. Wish all best of luck

  • Hi Pineapple_head, sorry it's taken me a while to get back but I've been pretty rough with my throat infection. Good to hear how well leflunomide has worked for you. Long may it continue x

  • I can relate to you so much, the leflunomide works well for me but I keep taken urine infections an cystitis which the doctor says has nothing to do with the leflunomide but I have read reports from from the web that it does. Hope you keep better.

  • Thanks Abbie, I hope you can get on top of your infections soon. Best wishes x

  • Hi ! Just saw your post and am sorry you are in so much pain- I' be been there. What caught my attention was where you mentioned your pain in arms feeling like a blood pressure cuff was around your arm. I have used those exact words when the RD strikes my elbows. I tried Lefludimide and it did not help me at all and I was only on it 2 weeks, but side effects were intolerable. Have you not tried MTX? It took a long time, but it has turned my life around! I've had problems with thinning hair and losing a lot. I take 5000mg of Biotin and dr upped folic acid to 2 mg and this has helped the hair loss. The Biotin is a B Vit you can buy without script, just over the counter.

  • As I read through all responses I realize you have probably have already tried MTX. Hopefully you will get to try biologics to help you.

  • It didn't work for me either, I have been taken different RA drugs since 2009, it has gotten worse now, I try everything he gives me, but its make your immune system weak, and the Humaria injections, and the other injections weaken my heart muscle, so I cant take those anymore, I glad I read about you, I thought I was the only one... Now my hair is thinning, but I don't know if I rather hurt or go through the side effects with the RA drugs...

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