Leflunomide - be alert!

[Steal]

I was diagnosed with severe bilateral ulnar neuropathic with sensory abnormalities in lower limbs and median and radial nerves in upper limbs. The neurologist says this is probable toxic neuropathy secondary to Leflunomide (based on correlation between the onset of the problem and the time of introduction of Leflunomide).I am posting this to alert others to the possibility of this apparently very rare outcome should they experience tingling and numbness in hands and feet accompanied by muscle wasting there.

I was started on Lef in Oct 22, noticed the problem April 23, consulted rheumi and GP over summer and did my own research. I thought Lef was perhaps the cause so ceased taking it July 23 against rheumi advice. Eventually managed to see neurologist (had to go private) October 23. A different rheumi referred me for physio to make the best of what muscle I have left in hands. I notice some marginal improvement but neuro says nerves take a long time to heal and might not recover significantly.

I can manage to do more or less all I need to but 4th and 5th fingers very weak and cold. I fumble with small motor movements and tire after a few sentences handwriting. Not the end of the world by any means but I'd rather it hadn't happened, hence the alert.

[Hidden]

That's such a shame the meds have caused this.That was good you listened to your own body and stopped taking it when you did.

I hope you feel much better soon 🌼

Thank you for sharing this with us.

Beautiful day here and I hope it is where you are.

Sending hugs

x

[TJ70]

I also started suffering with pins and needles numbness and burning in my hands especially at night a couple of weeks ago. I stopped taking Lef which I had been taking for about 18 months. I increased my consumption of water and this has helped immensely

[PMRpro Ambassador]

It isn't that rare - the lady who was the source of my post about leflunomide also developed it but luckily her rheumy knew more than yours apparently. And I do warn about it when someone asks on the forum about leflunomide. It is the side effect of LEF that scares me most I think!

healthunlocked.com/pmrgcauk...

[Steal in reply to PMRpro]

And yet NICE guidelines don't appear to have anything to say and the packet instructions don't alert you to the serious consequences. Iguess a bit of tingling and numbness is tolerable; loss of function is a different matter. Thanks for responses, all.

[PMRpro Ambassador in reply to Steal]

Do they not? Mind you - as I keep saying, NICE don't have guidelines as such, they are information articles and written by a third party on the basis of information they gather from references. Probably have no medical input at all, just medical writers.

The diarrhoea is also often glossed over, so to speak, with doctors dismissing it as a serious problem. Drug related diarrhoea that stops someone leaving the house is not a minor occurrence!

[Steal in reply to PMRpro]

Yes,had that too, and after colonoscopy was diagnosed with microscopic colitis, which I had suspected after a bit ofbasic research. The cost of that was not being able to attend a course I really wanted to, no way I could travel. Thankfully, more or less under control now, but still wary just in case and not ready to go on holiday yet.So reassuring to have this forum to compare notes and get info and advice.

[tangocharlie]

I stopped taking Lef as I got tingling in hands and and feet which was thought to be possible peripheral neuropathy. Luckily it's almost back to normal now but It took a while. A note to others, ALWAYS tell your doctor if you think you are experiencing side effects from any meds or if something changes in your body