I have to discuss taking leflunomide with my rheumy team this month so I've been researching here and elsewhere. I came across this paper which I didn't find on this forum and thought others may be interested. (Of course it may have been linked before and I simply didn't find it!)
From everything I've been reading I am thinking it may be worth giving LEF a go. But I'm worried about the need to stop alcohol - I am under so much stress (caring for my 90 year old mother) and I do like more than two glasses a week. Plus some of the other side effects are scary.
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They do say you should limit alcohol with leflunomide to around four units a week maximum as leflunomide can affect your liver. Ideally you should not drink alcohol, but a couple of glasses a week could be acceptable. .
My journey started with PMR in 2018. When Leflunomide was strongly suggested for me (diagnosed with very active large vessel vasculitis in 2020) I was given time to consider. I wasn’t too happy with the thought of giving up my evening glass or two of red wine and struggled with a decision until I admitted to myself that my health was more important than my favourite tipple. After the first two evenings without I can honestly say that it was easy. Three years later I have a minute amount extremely occasionally and am never tempted to have more. What a goody-goody 😄. It’s your choice.
PS. I have had no obvious side effects from Leflunomide (10mg daily) which I take at the same time as my morning Pred with breakfast and am currently on a very slow taper from 0.5mg Pred to zero.
That’s really encouraging thank you. And I’m with you having a similar thought that health is more important than a glass of wine or a G&T. (But I’m worried about dealing with my mum…)
Could you tell me please when you started LEF, what dose of pred you were on, and how the doses of the two drugs have changed. Were you always on 10mg LEF? I’m just trying to get a better sense of the path I’m going to be on as it were.
Have you seen the story I posted about Lorna Neill's pathway with LEF? She has PMR but a lot of evidence it is more likely due to LVV. 20mg caused problems but worked dramatically, 10mg is not enough, 15mg avoids LEF problems but requires some pred.
Yes probably - when you ask something in the middle of a thread you have a very limited audience, DL, me and anyone else who followed the thread. But almost noone else reads all of a thread when they join it!
I started 10mg leflunomide daily in October 2020 while on 5mg Pred reducing slowly to 2.5mg in March 2021. No one has pressed me to reduce Pred faster (apart from one new rheumy who told me to STOP at that dose 🙄 but did I heck?) I remain on Leflunomide to date and expect to continue after reaching zero pred but don’t know for how long or how the tapering will work. I’m taking one step at a time.
A big part of my decision give up wine was based on the risk of liver problems associated with Leflunomide.
I should say here that I wasn’t prescribed leflunomide as a steroid sparer but as a management strategy for the inflamed aorta.
A PET-CT scan in Jan 2023 showed ongoing inflammation in the blood vessels but this was much reduced compared to previous PET-CT two years previously. There was no increase in any aortic dilation and a subsequent echocardiogram showed that the aortic root was of normal size and the ascending aorta appearing to have normal dimensions. I have to wonder if this would have been achieved without the addition of Leflunomide: I tend to think not.
I have continued with 10mg leflunomide and a taper will be discussed at my review in March when 🤞I should have reached 0mg pred.
Everyone is different and of course there may be individual responses to medication. As you will have gathered things seem to have worked out well for me.
I do sympathise with your situation with your Mum and this may sound brutal but while alcohol may relieve some of the pressure (until its effects wear off) it won’t exactly resolve the problem. As piglette rightly says, you can restrict yourself to a couple of glasses a week and if you are able to stick to that it may be a solution.
I wish you well and am 99% sure that once you have made your decision - it will be a relief. There’s nothing worse than having unresolved issues going round and round in your head.💐
Thank you for taking the time to provide so much detail. I'm now on 30mg pred but having been on (lower doses) for 3 1/2 years I've had quite a lot.
Incidentally I do realise everything you say about the alcohol - but while my mum is still living on her own and I am her primary carer living 70 miles away. But that's all another story for another time.
To be so far away from your Mum must be so difficult. I do understand that having been in a similar position but 30 years ago with no health problems of my own to add to the stress. I can’t imagine what you are going through.
I have had a good phone call conversation with the Rheumy nurse at RD&E. That together with my research and your comments/posts here have resulted in me agreeing to try leflunomide. I will try to record how it goes as perhaps it will help others in the same position in the future.
Pleased to know you have made a decision-sometimes the hardest part with the ‘shall I shan’t I’ dilemma. It’s a good idea to make a record. My best wishes as you go forward.
I had the same concerns because, pathetic as it seems, I had my nightly routine of a G&T nightcap, which helped me sleep and some fizz on Friday with my husband to celebrate surviving another week lol. My liver function tests have not changed and my ESR and CRP are still down after six months so I am sticking with it. You should be monitored every month so you can see if your liver is affected. Even so, the risky side effects make it a difficult decision . Best wishes.
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