Leflunomide side effects

[Devoid]

I have been taking Leflunomide 10 mg for a few weeks and initially other than feeling more sleepy in the afternoon thought I was fairing o.k . This week I am struggling with fatigue in limbs , I experienced this with methotrexate and it just got worse until I stopped methotrexate. Has anyone experienced this with Leflunomide?

[PMRrunner]

I had side effects from Leflunomide that caused me to stop taking it after a period of time but these were peripheral neuropathy and diarrhoea not limb fatigue

[Devoid in reply to PMRrunner]

I think it’s probably neuropathy, I had some tests when I was taking methotrexate but they were inconclusive, it feels very similar to what I experienced then. Fed up of being a Guinea pig

[PMRrunner in reply to Devoid]

My feet and lower legs were painful especially when my feet when wearing shoes. It's gradually improved over the last two years. I'm now on Methotrexate and wonder if taking folic acid has helped.

[Devoid in reply to PMRrunner]

hi I take folic acid and did when I took methotrexate, unfortunately it didn’t prevent it. We are all different and what works for some can be awful for others. I’m just upset because I’m well on tocilizumab and have restarted it, but consultant wants me to try Leflunomide, so now don’t feel the benefit of the tocilizumab

[Rugger in reply to Devoid]

I, too, was well on Tocilizumab but it had to stop when the NHS allocation ran out. I managed to get to zero pred, but my Rhuematologist has started me on Methotrexate for fear that my GCA-LVV might flare on no meds at all. May I ask how your consultant managed to restart TCZ for you - and for how long?

I don't feel as well as I did for the 2 years that I was on TCZ. My muscles are weak and achy, which could, of course, be due to 6 years of pred. It doesn't feel as if it's the PMR returning and my inflammation markers are being monitored regularly, so I hope the LVV is quiet.

Sorry to hijack your Leflunomide query - I've not been offered that - yet! 😀

[Devoid in reply to Rugger]

hi started to feel unwell after about 5 months off tocilizumab. Markers started to climb . Had 8 weeks on a reducing dose of steroids and felt pretty awful. Then after a further 2/3 weeks with no medication had a ct pet scan that showed active vasculitis, this the consultant said was the evidence needed to get me a further 12 months of tocilizumab. When I came off steroids before and was just on tocilizumab I was the best I’d been since diagnosis. The Leflunomide doesn’t seem to be suiting me , I have bloods again this week and a fortnight ago the bilirubin was elevated so I think if that’s increased I will stop taking it.

[Rugger in reply to Devoid]

I hope that you can soon return to feeling good again and maybe have TCZ for as long as you need it. 🤞

[Jackoh]

I took Leflunomide for about 18 months. The symptoms I got was I believe peripheral neuropathy as a result of taking this medication. The other result I found was that I developed more infections on it with the consequence of having to higher my dose of pred which was counterproductive. 💐

[Devoid in reply to Jackoh]

I definitely feel that my legs feel like they did on methotrexate. I have restarted tocilizumab which has suited me before and I felt well with but the consultant has said I need to give Leflunomide a try. The problem is these drugs seem to build up in my system so it takes ages to get rid of the adverse effects

[PMRpro Ambassador in reply to Devoid]

Leflunomide DOES build up in the system and it CAN take up to 2 years for it to be flushed out altogether although it is usually months. But there is an antidote which speeds things up if necessary.

[Devoid]

unfortunately we are still battling here in the UK , I think my consultant is well aware that I’m better on tocilizumab than any other drugs but they are still not giving it long term for vasculitis patients, he did say he thought it could be changed before I come to the end of the 12 months I have been given

[Alebeau]

Was on 20 mg since Sept 2021 and recently reduced to 10. Fatigue for sure.

I also have numbness in feet and now starting in hands. I will ask to either reduce again or just stop as this numbness can be permanent.

Not my favorite medication.

[Devoid in reply to Alebeau]

I think it may be joining methotrexate on my list of least liked

[HappyDiamonds]

I have found this post very interesting as my Rheumy is pushing me to start Leflunomide. now so that it is in my system before my 12 months of TCZ runs out. I am on 5mg Pred reducing to 4 tomorrow. Im very very reluctant to take on more side effects as Ive just about had enough although TCZ hasn't caused any problems for me. My friend has peripheral neuropathy and has had at least 4 falls recently needing hospital stays. I have osteoporosis and already had spinal fractures, think a fall would finish me. Look like most people would agree with me.

[PMRpro Ambassador in reply to HappyDiamonds]

I think the only thing that you can do is try it - and if you have any signs of adverse effects, say no loudly. Lorna Neill from the Scottish charity had an amazing response to leflunomide, she said she felt it kicking in. But she did eventually develop peripheral neuropathy with a severe tremor so stopped it - she had been off pred but was back to 20mg with the resulting flare. She restarted with a half dose and built up and as far as I know is OK. It does seem to make a big difference if you you introduce it slowly which I suspect is what is recommended.

[HappyDiamonds in reply to PMRpro]

That was my initial thoughts but the last 3 weeks I have been so tired, very low, have diarrhoea and some anxiety, too drowsy to drive. We discussed Indapamide on my post and I have stopped it for 2 days and already feel more alert. My cortisol test is still going ahead tomorrow and my last weekly TCZ is tomorrow I should also start lowest dose of Leflunomide tomorrow. Then the plan is inject TCZ fortnightly for a while followed by 3 weekly until I run out by which time the Leflunomide should have kicked in. Then I will hopefully get off Pred and continue with Lef alone. I asked if I could just taper off the TCZ and very slowly reduce the last 4mg Pred but the Rheumy said being as I had flared after only stopping the TCZ for 4 weeks for my Op and my ultrasound scan showed inflammation the disease is still active and TCZ had controlled it but not halted it. She feared I would flare and have to go higher on Pred again and put myself at risk of further fractures. I even offered to pay for TCZ but she said I would have to go private and would then need to pay for everything and wouldn't be under the umbrella of the Hospital. Should NICE decided to allow TCZ to GCA patients longer term in the future I wouldn't be allowed back in if I had been paying for it. Now of course I have to find a BP tablet to replace Indapamide if it proves that is causing me problems. I couldn't tolerate Ramipril or Losartan. Oh, and the alternative 2nd choice to Leflunomide was Myclophenolate. When I asked why she preferred Lef she said the Myclo wasn't proved for GCA. Thank you for reading this far, its very complicated and Im finding it difficult to make a decision on my own.

[PMRpro Ambassador in reply to HappyDiamonds]

Can't say I'd come across any proof for lef in GCA either!! Or MTX ...

Of course - if she has a few references ...

[Devoid in reply to HappyDiamonds]

I would have thought as the ultrasound showed active vasculitis you would be in a similar situation to me for further tocilizumab. I had over 2 years due to the pandemic, but 5 months off it and inflammation was present. I do think a lot of us are being bullied by consultants when we have had good results on tocilizumab

[HappyDiamonds]

Devoid, please excuse me for replying to Pro for advice it certainly wasn't my intention to highjack your post but it just came at such an appropriate time for me. I wish you well and hope we all end up with TCZ extended Lord knows we deserve it.