Leflunomide

[Ellieellie]

Starting it today, slightly anxious . So fed up at the moment with the aches and pains and lack of sleep Getting frustrated over what I can't do. Just feel bloody miserable. Have handed notice in at work and waiting on whether or not my PIP claim in successful.

[MickeyJoints]

Hi,

I was on MTX for around a year and I've just stopped it to go onto Leflunomide. I know what you mean - 'Oh dear, is this another one that may give me a bad reaction - or worse, no benefit?'

After around 2 weeks of it, I can say that I've had no nasty reactions to it - so far so good. No benefit noted so far, but I did read that it can take 4 - 6 weeks before it starts working.

I've also read that there can be 10 - 14 days of symptoms getting worse, then - pouf! all the symptoms are gone one morning! So I guess if you start to feel worse on it, persist! That's what I'm going to do.

As ever, your mileage may vary...

[AgedCrone in reply to MickeyJoints]

I found no benefit from Lfl.....but it took away my appetite completely& I lost 12kgs & had an endoscopy before I realised the reason for my weightloss.

I don't have a large appetite & just didn't realise how little i was eating ....so do watch out for that side effect..

Do hope it works for you.

[Ellieellie in reply to AgedCrone]

Thank you. I will x

[Karen77 in reply to AgedCrone]

So far (after 2 weeks) the only side effect I am getting is looser stool in the morning. Would love the weight loss part, lol. Not being greedy here, I'd be happy with 7 kgs...

[AgedCrone in reply to Karen77]

It's always the way....those who want to lose weight don't!

I'm hovering around. 55kg & would really like to put on enough now to wear my winter trousers!...I don't want to buy Size 10 winter clothes & then put back the weight!

There's no pleasing me!

[nomoreheels]

I'm not in a position to give my experience of LEF yet I'm afraid Ellie as I'm waiting for my initial script once the letter from the registrar to my GP & myself arrives. I'm hoping it will bring us both under better control though! Sounds like you need a hug & I hope your PIP covers some of your lost income. x

[linda-5502]

Hi elellie

I too qwas the same a you and now taken leflunamide have been on it 8 months. It takes a while to kick in but it does help. Didn't gave any adverse effects to it.

Hope all works for you big.hugs to you xx

Linda

[Ellieellie in reply to linda-5502]

Thank you, I hope it does work. I can hardly move this morning as I am so stiff. Luckily not at work today. Be so glad when I finish for good on the 23rd Dec. Hope I get my PIP because I can't get the state pension until I am 66. Don't feel comfortable driving any more and as an estate agent that's part of the job. Finding I am using taxis more as it's easier for me out of work. Only 57. So fed up with everything!!

[Slife in reply to Ellieellie]

I too travelled a lot for work and I'm 53. Plugging the financial gap is a huge challenge. Applying for PIP but from what i gather, can't pin all hopes on it. Feels like an extra 'punishment'. RA more controlled for sure, now just have gall stone blocking bile duct and unhappy pancreas. Had gall bladder out 4 years ago! What's that all about?!! If it's any consolation, leflunomide worked quickly.

[Ellieellie in reply to Slife]

It never rains but it pours. I am not holding out much hope of getting it either. You pay taxes all your life and when you need a little help you get refused. Well I intend to appeal if not awarded. I had breast cancer in 2010 and had to cope with that as well as the R A. Would rather like life to give me a break!! Hope you get on the road to recovery before too long x

[Slife]

You could have been writing about me. I too gave up work in June as it became impossible. I was on HCQ which didn't help at all. I became increasingly miserable. I've been on Leflunomide now for about 3 months and have seen a vast improvement. It may just be personal but I have had a lot of infections. Good luck with it, I hope it works for you too. I feel for you and wish you well.

[Ellieellie in reply to Slife]

Thank you x

[MickeyJoints in reply to Slife]

Hi,

That is one of the side effects isn't it? You're more prone to infections. Something to be aware of and my rheumy nurse said to stop the Leflunomide if I got one.

I hope it works for all of us!

[Karen77 in reply to MickeyJoints]

I didn't know that! Something to watch for. Thanks for sharing.

[Lorin]

I totally get where you are coming from. I had good pain and swelling control on Arava which is a brand of leflunomonide in the U.S. Unfortunately had to go off of it because it raised my blood pressure. ;(. Hopefully you will get good relief. I have given notice of retirement this year, even though I am not mentally ready just because I am to tired for a full day of work.... Hang in there and keep your chin up.