Leflunomide
Posted , 10 users are following.
I have finally been persuaded by my rheumy to take Leflunomide. I turned it down about a year ago, as I felt the potential side effects were too high, as, apart from GCA, I also have bronchiectasis with pseudomonas.
But, when I saw her last week, she brought it up again, as I've been having problems with tapering/flares. I'd managed to get down to 7mg pred in November of last year, but my markers were up and after several months of going up, then down by 1/2mg pred, then back up again, I'm now on 12.5mg. I've got to the point where I am so tired of this constant yoyo'ing and feeling rough a lot of the time.
Another reason I was so reluctant to try Leflunomide is because I had terrible side effects with methotrexate about 2 years ago and I'm scared I'll experience similar side effects. I did mention tocilizumab to her, but she said she might have suggested it when I was on a much higher dose of pred, but not at 12.5mg.
So, I'm hoping some of you can reassure me of the side effects of Leflunomide. I'm on 20mg daily. Its only been less than a week and I know it will be several weeks before it kicks in. I know we all react differently, but it would be reassuring to hear some positive results!
0 likes, 15 replies
EileenH Susanne_M_UK
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Not sure about the side effects - it has also been mentioned to me recently but I am very reluctant as it will mean monthly (or more) blood monitoring and after last year I can't face being tied to the hospital!
I have a friend, heavily involved with the Scottish PMRGCA charity, who had been on mtx for a long time and it definitely helped her reduce the pred dose but that was about it. She became totally fed up with feeling "not right! about a year ago and it was suggested she try leflunomide. She has had no side effects to speak of as far as I know but after 8 months stopped pred. She says she felt it "kick in" and suddenly felt "normal" (not sure I'd recogise it!!!). Now she will continue the leflunomide for 1-2 years and then stop.
Susanne_M_UK EileenH
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Well, that's positive news Eileen! Feeling normal - wouldn't that be great.
Yes, I'll be attending St George's in London for fortnightly bloodtests for about 6 months, and blood pressure (then hopefully down to every 4 weeks). They won't let me do it at my local hospital as they want to "be in control". Its going to be a major issue for me travelling up on the trains/tube/walk to the hospital , but I'm that fed up with the current situation. The journey there and back tires me out for a couple of days after.
EileenH Susanne_M_UK
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Hope it goes OK and works. My rheumy is one of the top experts so I imagine he's happy to do that aspect and has suggested it. However, after last year I really can't face not being able to go anywhere for more than a few days at a time! Maybe later...
But I have a new and interesting problem: I had got to 7mg, PMR seemed OK but there was the wading through treacle bit which I assume is my adrenal glands not wishing to wake up promptly. Leflunomide won't change that. Then I realised that every afternoon I was having extended episodes of my previously very paroxysmal and extremely well managed atrial fibrillation. 8mg reduced them a lot, at 9mg I'm just about back to where I was. Where I've stuck for several weeks while on holiday/visiting the UK - should be an interesting discussion with himself on Thursday! I shall definitely push to have a synacthen test before trying any other drugs to get the pred dose down to see i it is worth it - pred would be my medication of choice for that, and it kills 2 birds with one stone. And I feel well and have no obvious adverse effects.
Susanne_M_UK EileenH
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Michdonn EileenH
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amkoffee Susanne_M_UK
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I've been taking Leflunomide for probably about a year maybe slightly more and I've never experienced any side effects from it at all. And the Methotrexate that was horrible. Was never more glad to get off of that drug. I don't know if it's the Leflunomide or not but I have finally been able to get down to 8 mg with no symptoms and no flare-ups. I've been doing a much faster taper than what I had been doing. Before I was not able to get below 11 mg. And like you I did a lot of yo-yoing for various reasons. And then I broke my ankle and my rheumatologist felt that it was because of the prednisone. So she wanted me to taper faster which is when I started a faster taper and getting down to 8 mg. Okay see you like it's helped me.
Susanne_M_UK amkoffee
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You've brought my hopes up that it might work without too many side effects, amkoffee! I'll be doing a fairly slow taper of 0.5mg every 4 weeks. Like you, I had awful side effects with the methotrexate and it really put me off trying another DMARD.
I'm optimistic now. 😊
amkoffee Susanne_M_UK
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catherine34621 Susanne_M_UK
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I was stuck on 20mgs. of Pred. and couldn't get down, I was put on Leflunamide a few months ago, now my Pred. dose is down to 7mgs. and 10mgs. of Leflu. each day. My inflammation levels are down to almost normal, and the only effect of either is a runny nose, I also sleep better, I was worried about the side effects but so far they haven't been bad, good luck!
Susanne_M_UK catherine34621
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Fantastic Catherine. Thank you for letting me know. You must have tapered very fast. I'm getting good feedback here so far.
catherine34621 Susanne_M_UK
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I tapered down from 20mgs in Aug.2017, to 12.5mg in Oct.2017 (I had a PET/CT scan then), I then went up to 15mg then alternate days 12.5mg/15mg till Jan2018 I then started the Leflunomide with 12.5mg of Pred. Feb.10mg Ihave dropped 1mg each month since then, and am now on 10mg Lefluno. and 7mg of Pred. I never felt it kicking in, the fatigue lessened before I started taking it, the inflammation suddenly came down as well so it couldn't have been the drug. The Rheum I see doesn't know why the disease has abated I'm just glad it has.
Susanne_M_UK catherine34621
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Susanne_M_UK
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Here I am 4 months on from starting Leflunomide. About 3 months into it, the nausea and fatigue kicked in to the point where I was physically sick if I missed breakfast (feeling nauseous, I sometimes couldn't face eating). I asked to come off it, but my rheumy decided I should try a half dose of 10mg. I feel slightly better, but not much. I'm being careful to have at least a little breakfast.
I'd managed to get to my goal weight after putting on loads of weight because of the high doses of pred, but have lost an extra 8 pounds without even trying! I never thought I'd get to the point where I don't want to lose any more weight!
I see my rheumy in about 6 weeks time. I'll see if I can last that long. 😕
EileenH Susanne_M_UK
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Susanne_M_UK EileenH
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I was on MTX 2 years ago for about 6 months, the last 3 months were awful, I felt like I was slowly dying. So when my rheumy suggested Leflunomide last summer, I turned it down. But when she suggested it again this summer, I was so tired of feeling ill every time I tapered that I gave in. I'll give it a bit longer, 10mg is better than 20mg so far.