Leflunomide: Starting it today, slightly anxious... - NRAS

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Leflunomide

Ellieellie
Ellieellie
15 Replies

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.

15 Replies
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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...

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AgedCrone

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.

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Ellieellie

Thank you. I will x

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Karen77
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... :D

1 like
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AgedCrone
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!

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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

3 likes
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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

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Ellieellie

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!!

1 like
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Slife
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.

1 like
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Ellieellie
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

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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.

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Ellieellie
Ellieellie
in reply to Slife

Thank you x

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MickeyJoints
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!

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Karen77

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

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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.

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