LEFLUNOMIDE - any info on side effects? : Hi all. Not... - NRAS

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LEFLUNOMIDE - any info on side effects?

priss58 profile image
43 Replies

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.

43 Replies
vonniesims profile image
vonniesims

I was fine on it, but watch your blood pressure as it can cause it to rise a bit

priss58 profile image
priss58 in reply to vonniesims

Thank you. I had a monitoring appointment last week and the nurse said it was a little bit high. Normally my BP is pretty good. I have a BP machine here, maybe I should check it myself at home in case it was white coat syndrome!

sylvi profile image
sylvi

I am fine on it to and i have just had mine increased to two a day with no side effects. xx

priss58 profile image
priss58 in reply to sylvi

Thanks, Sylvi. My sister is on it and she is tolerating it well. The best thing I ever took was Rituximab, I may end up on that again.

Belle76 profile image
Belle76

it worked well for me but it upset my stomach

priss58 profile image
priss58 in reply to Belle76

I have noticed that. I've been taking it about 6 in the evening in case of not being near a loo during the day!

smilelines profile image
smilelines in reply to priss58

I get 10 mg pills so I can take one at night and one in the morning because I was having the same problem.

MidnightBlue2001 profile image
MidnightBlue2001

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.

priss58 profile image
priss58 in reply to MidnightBlue2001

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.

MidnightBlue2001 profile image
MidnightBlue2001 in reply to priss58

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.

priss58 profile image
priss58 in reply to MidnightBlue2001

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

MidnightBlue2001 profile image
MidnightBlue2001 in reply to priss58

Oh good. Glad they gave you a number. Thanks. You too. X

K3-2 profile image
K3-2

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.

priss58 profile image
priss58 in reply to K3-2

Thanks for replying. I also have lichen planus, which my dentist keeps an eye on. I hoped that leflunomide would sort that out too, so it's disappointing if I get more mouth problems. I did actually think it was hot food. So you take this drug and another one as well?

s2202 profile image
s2202

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.

priss58 profile image
priss58 in reply to s2202

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.

s2202 profile image
s2202 in reply to priss58

Hi I am on a Rituximab type infusion, I understand it's probably a cheaper version of the same called Truxima.

priss58 profile image
priss58 in reply to s2202

Before I moved Trust, they were going to put me on that.

s2202 profile image
s2202 in reply to priss58

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.

SheilaT3271 profile image
SheilaT3271

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.

priss58 profile image
priss58 in reply to SheilaT3271

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?

SheilaT3271 profile image
SheilaT3271 in reply to priss58

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.

smilelines profile image
smilelines in reply to SheilaT3271

Why or why couldn't it have suppressed mine! 😀

HilaryWB profile image
HilaryWB

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.

priss58 profile image
priss58 in reply to HilaryWB

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.

HilaryWB profile image
HilaryWB in reply to priss58

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

priss58 profile image
priss58 in reply to HilaryWB

Blimey, that sounds horrendous. Originally, the consultant talked about a JAK inhibitor, it began with F, filo something. It sounded ok to me. I had an RTX infusion every year for 9 years. I was ok. We all experience these drugs differently, don't we? X

smilelines profile image
smilelines in reply to HilaryWB

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. 😳😱

HilaryWB profile image
HilaryWB in reply to smilelines

I think it was Germany and France, and maybe Sweden

HilaryWB profile image
HilaryWB in reply to HilaryWB

I looked it up on Medsafe New Zealand webpage, its linlked to a lot of nasties including interstitial lung disease

smilelines profile image
smilelines in reply to HilaryWB

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.

priss58 profile image
priss58 in reply to smilelines

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.

smilelines profile image
smilelines in reply to priss58

yes, apparently most side effects show up right away in the blood. The good thing is it is not new so they know what to watch for.

marie66 profile image
marie66

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

priss58 profile image
priss58 in reply to marie66

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

kev44 profile image
kev44

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.

oldtimer2 profile image
oldtimer2

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...

marie66 profile image
marie66 in reply to oldtimer2

I didn’t have blood pressure problems until Leflunomide even when I stopped taking it the blood pressure still remains high so on Ramipril.

nomoreheels profile image
nomoreheels

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.

medway-lady profile image
medway-lady

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.

smilelines profile image
smilelines

leflunimide has really been fine for me. No side effects that I can notice. But for sure watch those white bumps carefully.

Hannah-NRAS profile image
Hannah-NRASPartner

Hi Priss58,

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 helpline@nras.org.uk

Best wishes,

Hannah - NRAS

priss58 profile image
priss58 in reply to Hannah-NRAS

Thank you, that's all very useful!

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