Leflunomide

[xxspoonerxx82]

Hi everyone, is anyone on Leflunomide for there RA if so have u had any side effects as my RA nurse wants to put me on it along with my metoject.

[charisma]

I did have LEF a couple of years ago, very few bad effects and those wore off quite quickly. It was great for subduing RA for me.

I hope it really helps you too.

[Hidden]

I’ve been on lef since April - no real side effects at all, other than possibly speeding up of my existing hair loss (male pattern baldness). I’ve also been instructed not to drink at all: I wasn’t a big drinker, so that’s no issue other than the minute you tell me I can’t do something, I turn into a bit of a toddler about it 👀😂 I have found being on both mtx and lef at the same time that I’m more prone to skin/acne flares, and had to have antibiotics as a result a couple of weeks ago, but then I already had acne and issues with cysts and abscesses before being diagnosed with arthritis anyway. The important thing for me is that it’s working a lot better than just the mtx on it’s own - on 20mg, I was struggling to get off pred for the lack of effect, but the lef seemed to make a huge difference and I’ve been completely off steroids for about 8 weeks now.

[xxspoonerxx82 in reply to Hidden]

When I was first diagnosed with RA I got put on steroids and methotrexate but after being on the steroids for 3 months I asked to stop as I gained 3 stone 🤦‍♀️. I've been on metoject since January but I'm still waking up with pain in my wrists and hip so that's why they wanna put me on Leflunomide, I dont drink neither so that's not a problem for me

[margyb]

Hi,

At 71 I have been on Leflunomide since 2016 and haven’t had any side effects. I hope it is the same for you!

I had been on Methotrexate for years, but it made me fall asleep uncontrollably during the day and I had been asking if there were anything different.

At the moment I am very grateful that my RA seems to be in remission because I have been taken off the Leflunomide medication whilst undergoing Infusion Treatment for newly diagnosed Inflammatory Bowel Disease.

I wish you well.

Margyeb

[Gnarli in reply to margyb]

I'm sorry to hear that, margyb. I hope the infusions help you

[xxspoonerxx82 in reply to margyb]

Sorry to hear that, I hope everything goes well xx

[vonniesims]

I did well on it apart from thinning hair and raised blood pressure. Good luck

[Ferret18]

Hi

I started Leflunomide on Thursday so early days for me and all good so far. As advised by others on here I take with a very large glass of water.

I was on MTX injections but I had such awful nausea for 3-4 days after each injection that’s why mine was changed.

Good luck with it

[xxspoonerxx82 in reply to Ferret18]

I was on methotrexate tablets but had horrible side effects so they put me on 15mg of metoject and I have to take folic acid 6 days a week as I suffer with anaemia so was getting tired constantly

[Ferret18 in reply to xxspoonerxx82]

Yeah, I had folic acid 5 days a week but no good still had awful nausea and felt shattered.

I hope it goes well you.

[Beviejon1]

I've been on lef for a few years now.It has helped me .no side effects.

[Mmrr]

Hi there, I started leflunomide 10 mgs a day 3 days ago, so far so good. I've had no side effects to speak of 🤞

[Suzy-P]

I had Leflumonide added to methotrexate regime about two years ago and between the two of them feel pretty good. No side effects from Leflumonide. Just make sure you have regular blood tests and check your BP as it can raise that. And I confess I do have an alcoholic drink a few times a week but limit it to a glass of wine or a G&T and it hasn’t caused me any problems so far. Good luck.

[xxspoonerxx82 in reply to Suzy-P]

Thank you hun an I dont drink anyway so that's not a problem

[Eiram50]

I’ve been taking it for years with biologics and methotrexate. No side effects from the leflunomide, at all.

Best of luck with it all.

[medway-lady]

Great medication it worked well for me.

[Floradora1985]

I've been on it for many years, in combination with a biologic and it's worked for me brilliantly. No side effects but it is a nasty drug. You absolutely cannot drink on it (more than the very occasional 1) and talk frankly about it with your team if you of 'of child bearing age' and considering getting pregnant in the future. In both these respects it is somewhat life limiting... I was never a big drinker anyway but it is frustrating not to be able to socially drink with friends or on big occasions. I have also not had any children, partly due to other circumstances and partly due to the stressful amount of planning and risk management that this entails, it makes it very pressured to even consider. There is no chilled out, we'll stop taking precautions and see what happens if you are on this drug the whole thing becomes a nightmare, you have to have a drug wash out procedure as it stays in your system for 2 years, therefore unless you wanted to plan 2 years ahead and go unmedicated for that period of time you can't stop the drug and then start family planning. All that said, it has been a life changing drug for me, I was very poorly managed before I was on it, other drugs didn't suit or work for me and I'd be reluctant to stop it any time soon.

[xxspoonerxx82 in reply to Floradora1985]

Yh I will talk to them about it so I understand it more but I don't drink anyway and I'm 38 and dont want any more children lol I've got 3 girls and 1 boy, my oldest daughter is 21 and has a 2 yr old daughter so that's enough for me x

[Waffs]

Hi, I was on Leflunomide from March this year as well as Methotrexate which I started 3 years ago. I had stop taking it a few days ago as I had diarrhoea for the whole time since starting it. I am now much better and my reumy has suggested biologicals as the next step forward. I know many people have positive comments about the drug but for me unfortunately it did not work. I hope it works well for you.

[embroy]

This drug didn't suit me, I had to stop it as my liver function was very high.