Hi all. Not been on much as I'd struggled to see a consultant after a move to a new Health Trust, but back in May I managed to see a Rheumatoid consultant who is now managing me! After 4 years of no meds at all, he's started me on Leflunomide. So far I've just felt a bit tired in the afternoon but that's fairly normal for me, but I've just noticed about 3 or 4 white spots on the roof of my mouth. I don't know if I've burnt my mouth or it's something else. The leaflet does say you can get mouth ulcers. I've only been on it for about a week and take 10mg. Anyone been /are on this drug, and how has it been for you? Thanks.
LEFLUNOMIDE - any info on side effects? : Hi all. Not... - NRAS
I was fine on it, but watch your blood pressure as it can cause it to rise a bit
I am fine on it to and i have just had mine increased to two a day with no side effects. xx
it worked well for me but it upset my stomach
I've been Leflunomide (20mg)for several months now. I feel pretty spaced out and extremely tired on it. It seemed to reduce swelling within the first month but now it doesn't appear to be doing much at all. It didn't reduce any pain but I have noticed that my pain has increased and the swelling has returned. Have to wait until the end of January to speak with my consultant about this as there are no appointments left.
I have felt a bit light headed too, with a pain in my temples which comes and goes. Also, the swelling in my fingers has got worse. I'm sorry you can't get to see your consultant. Since moving up country in 2018 it took me til last May to see a consultant, and I have to get a train to see him, it's a trek.
Thanks. Man, that's a long wait. There are so many of us in the same position. The waiting time to see a consultant is crazy...especially when you're in pain/swelling. It's a real struggle at times. I really feel it for you. I have the same issue with my temples. I get severe headaches but I also suffer with TMJ and it makes it worse. The swelling in the fingers is so horrible. I haven't been taking Leflunomide for that long but if you ever have anymore questions please feel free to ask me. It can be quite scary taking these medicines and not having someone to talk to about it. I can't even speak to a nurse or anyone between appointments at my hospital. My family don't really understand my situation so it can be so hard at times.
I wish you the very best and I hope that Leflunomide works very well for you.
My family never understood either. As I just got on with things, they probably thought I was fine. I'm on my own now, so it's worrying if I get any sudden effects. The hospital has given me a number though, so that's always something. Thanks for answering, take care x
Hi there..I've been on Leflunomide for about 2 years at 17.5mg daily. I do get the occasional sore patch on my tongue which felt like I've had too hot food. Unfortunately it wasn't working properly by Feb so I started on Apremilast 30g twice a day as well.
Hi I've been on Leflunomide for 2 years or more and have 6/8 monthly infusions. I've had no side effects that I've been aware of.
Thanks, that's good news. May I ask what infusions you have? I was on RTX for years, and the consultant said he may put me on it again at a lower dose.
Hi I am on a Rituximab type infusion, I understand it's probably a cheaper version of the same called Truxima.
Before I moved Trust, they were going to put me on that.
Well it seems to work for me and I'm usually quite well. I have periods when I have flares, but that's definitely tied in with when I do too much. I have a fairly large allotment, which I love, but in the summer when it's full on, it does affect my health when I overdo it. Wishing you well.
I was prescribed leflunomide in early summer this year on top of my existing biological drug, Etanercept, to help manage the occasional flare. Since falling off a bike and fracturing my femur, elbow and neck, I was taken off my meds for couple of weeks after they operated on the femur and only then did I realise it had been suppressing my appetite and as a result I was losing weight which given my small frame was an issue especially as I needed all the nutrition to help mend my bones. I’ve since agreed with my RA consultant not to go back on Leflunomide.
That's interesting, I also have a small frame and don't weigh much. I'm always being told off by my daughter for not eating enough. I have osteoporosis from years of steroids. I took Etanercept many years ago which didn't do much for me. Presumably though, the appetite thing was the only effect you had even if you didn't know it?
now I think of it I seemed to also suffer with upset stomachs and lose stools which have resolved since coming off it so am definitely not going back on it as I can’t afford to lose any more weight. Whilst the consultants can give you all their expertise and prescriptions only you know how your body is responding and whether you can tolerate side affects.
I have RA, and was offered this drug when Hydrochloroquinone failed, but after having researched it I refused to take it. It has been banned in many countries due to high numbers of deaths. You can get the info if you google for Leflunomide and safety issues, Leflunomide ban in several countries or similar.
Thanks. To be honest, I'm wary of all drugs, and really don't want to take any of them! I will research this though. What I've read already is giving me the fear. I've pretty much tried all the RA drugs over the years since 1998. The only one, apart from prednisone, that worked was RTX, and taking that scared me stupid. I've only just started this, but I will be monitoring myself closely, and hope I can get a hold of the hospital dept should I need to. My previous gp and consultant in another Trust were excellent at this. But times have changed. May I ask what drug you are on now? But don't feel you have to answer if that's too personal a question.
Of course! Started on Sulfalazine, dreadful side effects, then Hydrochloroquinone which gave me the start of cataracts, and Chronic Actinic Dermatitis, then turned to Ayurveda medicine, using Curcumin etc which helped, then after my 3rd Covid jab I woke up in agony, rushed to hospital to se Rheum, it was apparently a massive cytokine reaction where my immune system went haywire, I was put onto the JAK in inhibitor Biologic drug Barcitinib against my wishes, but I had no choice, and it has been a life saver for me and has given me back my life. Yes, there are risks but I am well monitored and I have my life back. Its a tablet which can be stopped at any time, My respiratory consultant told e to avoid Rituximab as he had seen a lot of deaths with it All going well at the moment !All the best ,x
I was trying to see which countries it was banned from and I couldn't see any. Do you know which countries banned it? While searching I was shocked to see that women in some States are having trouble getting their methotrexate because of the ban on abortions. 😳😱
I think it was Germany and France, and maybe Sweden
I looked it up on Medsafe New Zealand webpage, its linlked to a lot of nasties including interstitial lung disease
I can’t find any evidence of bans on leflunimide. Seems like the danger of it is similar to methotrexate. I better go and get my chest X-ray. I am overdue. My doctor monitored my blood closely when I first started leflunimide so there must be risks. Methotrexate was a hard no for me as the side effects landed me in the hospital.
I'm going for bloods every two weeks for three. Then once a month for three, then every three months, but I would've expected that really. When I was in MTX, then RTX, I was constantly getting blood taken! I've had x rays and so on, a few months ago. I'm still concerned but no matter what they put me on, I'd be like that! Meanwhile, I'm looking out at icy snow and I'm not happy.
I was on leflunomide alongside methotrexate and felt pretty good. I lost 2lbs in weight every week whilst on it and my joints felt better too. Unfortunately I took a bad reaction and I developed skin discolouration on my face and neck almost like a pregnancy mask. In the end the rheumatologist recommended I withdraw it and add hydroxychloriquine into the mix instead. M x
Ah. I've noticed my neck is a bit itchy but no discolouration. I can't afford to lose weight, I'm tiny as it is. Someone else said they were losing weight as it suppressed their appetite! Maybe I should go and get myself a couple of mince pies! Thanks for answering. Take care x
My Reumatologist suspended leflunomide 2mths ago due his suspicion that it might be causing the polyneuropathy that I've been diagnosed with after
having an electromiografia and nerve conduction test.
It's unlikely that the white spots are related to the leflunomide. If they spread or don't go away ask for medical advice.
Leflunomide is a no for me as it affects blood pressure and mine is all over the place anyway - the cardiologist says: drink plenty, get up slowly and don't worry about it unless it stays raised...
LEF was working ok for me as double therapy with MTX but I had to stop it because of peripheral neuropathy & bilateral carpal tunnel. It did raise my normally bob on blood pressure but only for the first couple of months then it settled.
All you can do is as with other meds, see how to respond to it & hopefully you'll be ok.
It was brilliant for me for over 6/7 years then I got an AKI and it had to be stopped. The AKI was not due to LEF. I led a normal life, after the first 2 weeks no side effects at all. Brilliant drug for me.
leflunimide has really been fine for me. No side effects that I can notice. But for sure watch those white bumps carefully.
To add to what everyone has said above (and thank you all!), you may find these resources helpful:
- yellowcard.mhra.gov.uk/ Here you can report any suspected side effects to the medications being used in your treatment.
- nras.org.uk/resource/leflun... Our information webpage on leflunomide which also covers some of the commonly reported side effects.
- bnf.nice.org.uk/drugs/leflu... The National Institute for Health and Care Excellence's Information resource on leflunomide.
I hope you find this information useful and wish you all the best. Should you require any additional information or support please contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at firstname.lastname@example.org
Hannah - NRAS