Other peoples experience of Leflunomide please?

[meadow-mogs]

I started leflunomide 14 weeks ago and my RA seems to be increasing with many more joints being involved. It feels like one long flare ,my quality of life is very poor, pain ,fatigue and limited mobility.

[Madmusiclover]

I had horrendous headaches. Think I lasted 5 days on it.

[nomoreheels]

I didn’t go higher than 10mg, wasn't on it too long but I think it helped somewhat. I had to come off it unfortunately as I was having unusual (for me) fizzing in my legs & numbness in my hands similar to what I experienced when I had Carpal Tunnel previously. Many do well on it though without problem & had the neurological problems not have been troublesome (confirmed by two sets of tests, once whilst still taking it & repeated when halted) I would probably have been one.

Is it your only DMARD? As you probably know LEF like others do need time to build up to working & you're at about the time you should have noticed improvements. Have you made your Rheumy team aware how you are, if so has an increase in dose not been discussed? Some choose to start on a high dose for a few days & reduce to what will be normal dose, either 10 or 20mg. Was this how it was for you?

If your team aren't aware I’d let them know, see what their thoughts are.

[AgedCrone]

After 14 weeks… ..even if you have no definitive side effects I’d have a word with your rheumy nurse…after that length of time, Lfl had completely removed my appetite with no improvement of symptoms at all ….& I lost around 12 kgs I could ill afford to lose.So that was Bye Bye Lfl…Hello Rtx…best move ever…that was 6 years ago..& I’m now on only one drug every 6/7 months…& feeling really good.

[Haylonico in reply to AgedCrone]

What is RTX please? 😊

[AgedCrone in reply to Haylonico]

It’s a Biologic drug..Rituximab…but it doesn’t suit everyone.If you are still not settled on a Dmard that is working for you…explain to your rheumatologist and ask to be prescribed something different……..it can sometimes take a long time to get settled on a RA drug that suits you…so don’t suffer in silence.

[bpeal1]

Leflunomide was the DMARD that made the most difference for me and I suffered no side effects from it. Unfortunately it still wasn’t enough so I moved on to biologics but have continued the leflunomide with them.

However, after 14 weeks with no improvement I would contact your rheumatology team and let them know. Maybe it’s not the one for you or maybe you need to add something to it.

[sylvi]

I have a lot of fatigue since being in it. My ra has been a lot more stable though.xxxxxxx

[verticalaudio]

I’m sorry to hear that your symptoms are not improving and agree with other replies here - I would expect an improvement by this stage, so you should probably let your team know.

For me Leflunomife did seem to make an impact (inflammation & pain in hands & feet reduced), though they kept me on a low Prednisolone dose alongside it. I had a week of nasty headaches but those stopped and then lost quite a bit of my appetite, but after months of steroids I was actually quite pleased by that!

In the end I had an allergic reaction so had to stop taking Leflunomide, though it was never clear whether that was due to Lef or the Infliximab I was also on at the same time or the combination (there was a study that showed this to be a pretty toxic mix).

Nothing since has controlled my RA symptoms as well as when I was taking Leflunomide, other than the dreaded Pred.

None of this is anything like an exact science as far as I can tell and each person seems to respond so differently to medication. I wish you well with your journey & hope you find the right treatment for you.

[Ferret18]

I started in 20mg but couldn’t tolerate it. Went down to 10mg and it’s been great for me. Helped keep the symptoms under control. Hope you find something that works for you too.

[nethyman1]

Hi

My understanding is that it takes at least 4 weeks for LEF to start to help. Other information shows it can take a year in some cases. I am on LEF and tapering Preds. DMARDS do not work as fast as Preds that why both are prescribed in combination, with Preds reducing hopefully to zero. In my case not achieved as yet, after 12 months.

[Garnacha]

Hi lef was added in to my other meds (etoricoxib, hydroxy & mtx) in March this year at 10mg, saw consultant in September as no real improvement & pain getting worse, it was increased to 20mg & after 6 weeks a definite difference, however, I had also started getting really bad vibration sort of feelings in my feet & legs & occasionally in my hands, the consultant said lef can cause neuropathy & perhaps to try 15mg to see if it improves, the only thing is, I forgot to mention to him I'd been having these vibrations when I was on 10mg so dropping to 15 isn't likely to make a difference.

In September we discussed that if lef didn't help I'd have to try sulfazine, I'm just waiting for the Christmas break to be over to contact him, I am dreading it as sulfazine can take up to 6 months to work so I'll be back at square one 🙄 x

[Boxerlady in reply to Garnacha]

When Sulphasalzine was added to my existing Methotrexate and Hydroxychloroquin things started improving within a couple of weeks so hopefully it will work quickly for you too.

[medway-lady]

Same here and then one day I woke up and RA had just Gone ! in remission for years. Bur before that happened I was in agony it seemed to make the RA worse so be patient it was around 12/14 weeks for me too and then no side effects just a med that worked extremely well.

[marie66]

I felt good on Lft. Used it for 6 months alongside methotrexate and hydroxy. It was beginning to help but then I started to get a skin reaction darker patches on my neck and face so had to come off it. I lost a bit of weight on it too but the next batch of steroids put it back on! M x

[allanah]

Really helps me, been on it years with no side effects, 2 tablets a day. Reduces my pain and swelling very well. Good luck x

[Deeb1764]

I did not last long at all on this and called my RA team who took me off and put me on Benepali then Olumiant.

[Anywhere311 in reply to Deeb1764]

How did the Olumiant go for you ? I started getting tingling in my feet and legs while on Olumiant . Prior I was on Tremfya for 3 years and I lost all the hair on my body so that’s when I switched to Olumiant and than obviously got off that . Thinking about leflunomide but with side effects being tingling of feet . I’m not really too sure . I dunno what to do :/

[Deeb1764 in reply to Anywhere311]

I am doing ok on it my bloods like it but it’s been a slow process with it as I keep getting chest infections so been on and off it so trying to get to 13weeks on without antibiotics. I have done lefluomide sulfasazine benepali and methotrexate and this has been best so far. But since I now also have raynauds fibromyalgia and sojerns I always seem t have something going on so just try to keep things as calm as I can 🤪

[smilelines]

I have been on leflunimide for a year in February. It has not been working very well so I am going on biologics as well. I have no idea why my rheumatologist has let be go uncontrolled for so long while trying this!🤷‍♀️🥵. My next appointment was for the end of January but I called and saw her the end of November as I was so sore. She saw me again in December and she has changed my diagnosis to a different inflammatory arthritis which is not usually responsive to this drug so at least she will be making some changes. In hindsight I think I should have pushed and not let my appointments be so far apart. When I did reach out and ask for help she has listened so I think you should call.

[Blodynhaul]

Very sorry to hear that Meadow-mogs. I was on Leflunamide for about 6 years (MTX before that for about 13 years), then it stopped working around the beginning f this year (2021) for some reason. I had gone onto Lefluamide after the MTX gave me toxicity issues in the end. It took quite a few months for the Leflunamide to pick up, but it did and must admit I had no problem all with it. None of the runny tummies or anything. In fact, I really miss it and how I was on it, as this year is dreadful with nothing working, but that's another story!

When the biologic Adalimumab didn't work for me earlier this year, the rheumy did a blood test to see if i was producing antibodies against it working - and I was. Not sure if there's a test you could have for Leflunamide, though it's not a biologic, so probably not. As seems to be the case, it's rather pot luck what works for everyone. Sounds like it should have worked, or started to help by now for you, which it hasn't, so best to contact the rheumy with a view to trying something else, maybe they'll suggest a biologic this time.

O yes - I was on 20mg leflunamide /day and not on any other RA drug the same time.

Good Luck, hope the New Year brings better health! X

[meadow-mogs in reply to Blodynhaul]

Thamk you

[LynneB-NRAS]

Hello

If you feel you need support or further information about RA and different medications, you can contact the National Rheumatoid Arthritis Society (NRAS) on 0800 298 7650. We also have a website nras.org.uk which has information and resources which you may find useful.