Help with leflunomide

[Cally55]

After a week on 20mg leflunomide daily have temporarily stopped because of terrible runs! Only slightly offset by the codeine I take for the spinal fractures. The leaflet with the drug mentions the runs. The other effect that bothers me is that my feet are tingly and slightly numb and my thighs feel like lead, by end of day was having trouble going forwards. This is not the same as pmr stiffness and gets worse through the day. Locum gp said to ring rheumy nurse and was surprised when I told her that said nurse was only available via answerphone for 2 hrs on tuesday and Thursday mornings. Until the I have stopped taking leflunomide.

Anyone else experienced this and if so how long does it take to wear off?

[PMRpro Ambassador]

Someone has told me recently they were on leflunomide (for PMR) and developed signs of peripheral neuropathy (the tingling and numbness you mention) - the rheumy stopped the leflunomide immediately. I think that had been her only noticeable side effect (the only worth mentioning at least). She is braver than me - because it had worked so well for her she has asked to try half the dose and see if that also works.

Diarrhoea is one of the most common adverse effects of leflunomide. They claim it usually occurs early and then improves over following weeks. I do know of a couple of people where it was so bad they couldn't leave the house - but it took them a few weeks to tell their doctor NO!

Trying taking their so-called steroid sparers is one thing if they don't come with severe downsides - even a few days of diarrhoea would be too much for me. While I was on methotrexate, it wasn't that severe but when I needed to go I needed to go - I was not happy about leaving the house a lot. That was enough, in combo with all the other things, for me to say enough. And the rheumy didn't suggest I try lefunomide - I assume as I had had hair loss and diarrhoea with the mtx and they are the most common effects with lef.

[Cally55 in reply to PMRpro]

Thanks pmrpro. As I have had a section of large intestine removed because of diverticulitis the diarrhoea is a bit of a problem! I feel I'm giving in a bit soon but if it is peripheral neuropathy I really don't want it. My mother was completely immobile for the last 5 years of her life with this, unless she actually had pmr?? I don't think I'll go there!!

[PMRpro Ambassador in reply to Cally55]

No - I'm with you! As I say, if you can take the drugs without problems, fair enough and it is possibly worth trying. But there are no guarantees that they will do anything anyway - and I know a few people who have been put on leflunomide who have had to stop because of particularly nasty adverse effects. Getting the rheumies to admit that possibility seems rather difficult. And to me - that is not informed use of an additional drug.

[Odosmum]

I have been taking leflunomide for several years for inflammatory arthritis (PMR for 18 months). I had dreadful diarrhoea initially but it did pass. I still feel that I walk a tightrope between it and the codeine 😁 However despite that and some numbness in my middle toes, I feel it is a very effective drug for me. I suggest that you persevere and steer clear of heavy, hot meals (which always set me off 😊).

[Gosingen]

Hi there... sorry about delay in responding. I've tried several steroid sparing drugs, including Lef.. but like you I had severe diarrhoea, same with Methotrexate and something else I can't recall the name of. Long term steroid used (PMR/GCA) and never got below 8mg, currently 10mg. I don't tolerate drugs well at all, and as it's awhile ago since they tried me on Lef, I can't recall exactly how long I lasted, but probably no more than a week or so. Like PMRpro says, if well tolerated, grt.... if not then I assume it's up to ourselves to make a decision to continue or not. I couldn't. Sorry can't be more helpful. Wish you all the best with your PMR.

[PMRpro Ambassador in reply to Gosingen]

Azathioprine????

[Gosingen in reply to PMRpro]

Morning, and thanks hon. No never even tried it, because the blood test they took prior to starting it indicated some issues, really can't remember what they were. Hey ho, drugs and me are not good companions.