Leflumonide

[Peep44]

Has anyone had problems with the side effect of peripheral neuropathy with Leflumonide? I have been on it for a few months. My feet have been going a bit numb for about 4 months and losing some sensation. This comes and goes but it getting worse overall. My left forearm and wrist has been a bit sore and puffy too for about 2 months. It burns with no redness. It is getting worse and slowy moving up my arm. I read somewhere that neuropathy can cause this burning feeling too.

[raistough66]

I’m just coming off leflunomide 20mg and I have had hair loss, thinning and my toe nails have turned yellow. Fungal infection colour and 1 of my toe nails fell off after I was drying myself after taking a shower. Still it allowed me to work without my brain fog that I had from the Salfasalazine I was taking before.

[Peep44 in reply to raistough66]

My hair loss started with methotrexate and continued with the leflumonide. It has slowed a bit. Sulphasalazine gave me a bad headache. What are you going to replace the Leflumonide with?

[raistough66 in reply to Peep44]

They are going to put me on Adalimumab(Humira) injection every 2 weeks. They’ve said I shouldn’t have many side effects but I need to be very careful about infections and people who might have chicken pox and similar infections. My chances of skin cancer have increased though.

[Peep44 in reply to raistough66]

It's scary to think about trying a new med. I got the impression from my Rheumatologist that I didn't qualify for anything other than the cheap DMARDS. Leflumonide is my 4th DMARD. I think I have to have erosions and other things to qualify. Even getting an xray to see is near impossible. NZ health system is tough.

[nomoreheels]

Hiya Peep44. Yes, I did, it was the reason I stopped taking it. My Rheumy wasn't convinced as at the time it was listed as a rare side effect (now listed as common or very common interestingly) but did arrange for nerve conduction tests for me at another hospital. When they came back strong positive she agreed I could halt it & have repeat sets to compare the results. The second set of tests included electromyography (EMG) & again were conclusive, they were reducing, so it was agreed I'd stop it. The peripheral neuropathy decreased in the following months after stopping LEF & has now gone.

Definitely discuss your issues with your Rheumy & request NCS inc EMG if it's not offered. If I hadn't pushed for them I dread to think how bad mine would have become as it was bad enough by the time I had the second tests.

I hope this helps?

[Peep44 in reply to nomoreheels]

I doubt I would be able to have those nerve tests through the public system here in NZ. They have a high threshold for lots of tests. Were your symptoms constant or did they come and go? Mine gets worse when I move about more and am having a bad day or a flare.

[nomoreheels in reply to Peep44]

I didn't realise. I suppose it's down to severity is it? The worse the symptoms the more the likelihood of them being investigated? If that is the case I do hope they don't cause you big problems or your Rheumy accepts without conclusive proof that LEF is the cause of them.

[Peep44 in reply to nomoreheels]

All year I have talked to my doctor and physio and they say "wait" to you see your rheumatologist." I see him every 6 months. I last saw him in Dec last year. I have just emailed to see when my appt is and I don't even have one in the system. I am now on a 2 month list.

[nomoreheels in reply to Peep44]

Mmm, not ideal is it? It was my Rheumy not my GP or Physio who referred me so maybe yours will, when you see him! I do hope it doesn't worsen though, but if it does I'd contact your Rheumy nurse (if you have a helpline to them) for advice, or your Rheumy's secretary if all else fails.

[Peep44 in reply to nomoreheels]

Thanks. I will ring his nurse.

[raistough66]

The only times I’ve had puffy, burning sensations in my arms is usually about an hour after I’ve had some food which has caused a mini flare up, what I call it. I usually get it in my left wrist and it travels up into my elbow and shoulder. It gets so painful and swollen that I can’t bend my wrist or move my arm. It lasts for about 24 hours and pain meds barely touch it. I find that red meat, tomatoes and chocolate can set it off. I once ate the 8 meatball meal at IKEA and then had to drive home with a swollen left arm. Luckily the journey was mostly on the motorway so I was able to keep it in 5th. It might not be entirely leflunomide which is causing it.

[Peep44 in reply to raistough66]

Gosh that's interesting. There seems no obvious trigger for my problems. It gets worse when I am having a mini flare and I have been overdoing it. My arm and wrist burns. My feet feel numb and sometimes burn too. Luckily I can still have chocolate!