Leflunomide

[Robert17]

My consultant has recommended Leflunomide since I have been unsuccessful at tapering the Prednisolone below what he regards as high levels. I have just collected my first month's supply and read the accompanying notes. I had been advised of the possible side effects before agreeing to this additional medication but reading more about them in the cold light of day is rather scary especially the alcohol warning with Christmas coming up. I can only hope that the rewards are greater than the risks otherwise the consultant wouldn't have considered Leflunomide. I was wondering whether other people have had success in reducing their Pred intake as a result of using Leflunomide

[olive2709]

What does he call high

[Robert17 in reply to olive2709]

Olive

He calls high anything over 10 mg of Pred daily. He regards the long term usage at such levels as extremely dangerous and has had some success with people who have experienced flares and yo yoing in reducing their steroid intake by adding Leflunomide starting at 10mg. He acknowledges the side effects and has put in place a more robust monitoring routine covering blood tests and blood pressure beginning at fortnightly intervals.

[olive2709 in reply to Robert17]

I had a flair this time last year after getting into club 0,

Had to go back to 10mg daily tried to reduce after a month couldn't GP sent me to rumatolagist saw him 1st May he put me on 10/9 alternative days for a calender month then 9 for same time , then 9/8 and so on saw him last Monday down to 7 no problems ,was starting 7/6 on Tuesday 1st told me to stay on this dose till March next year as winter cold and not the best time to reduce ,one thing he stressed was if any problems come to clinic not GP I take thyroxin as well and some sideffects or wrong dose can be simler so I was told

Good luck hope it works out for you

[venezia1]

Hi - I have been on Leflunomide for a while. Started at 10mg, which was fine, but when the dose was increased to 20mg I started vomiting, so went back to 10mg. As far as I know it may be helping - I am using the very slow method of pred reduction and am down to 7.5mg. After several years on pred this feels like progress. Good luck.

[zebsky in reply to venezia1]

I was pleased to see your blog as I was put on Leflunomide on Monday by my rheumatologist and after reading about the side effects I haven't started on them yet. I will see what response you get as I am feeling a bit reluctant to take them.

[Trenny in reply to zebsky]

What dose do you take?

[zebsky in reply to Trenny]

I was put on 10 mgs for a month then increasing to 20 mgs .I actually haven't started them yet - I'm seeing my GP on Thursday and I want to see what see thinks:)😊

[Hidden]

I am jumping in in the drinking comment. I had to take a nasty drug methotrexate until it almost killed me. 6 months of feeling poisioned and I finally said NO more. I will not take anything that tells me I can't have a cocktail ever again. I have maybe 4-5 a week if that. I feel so much better after my tequila sunrise.

While on holiday I had maybe 5 drinks a day ok they were really weak and I really never felt a buzz but I felt great.

I will admit that a lot of the times I get a hot flush after my drink. It is probably what keeps me having another. Lololol🍸🍷🍹🍺

Oh I like beer but do not drink many as when I had Fibromyalgia a long time ago I was told it did something to the muscles. I was 42 and had fibro for five years, I often wonder if it was PMR then as it is now.

[Robert17 in reply to Hidden]

Lin-calif

I was told not to have more than 10 units of alcohol a week at the most whilst on Leflunomide. That's not even a glass of wine a day! I also enjoy the odd pint of local bitter and each one of those is over 2 units. I have decided to do what I can to give the medication a chance to work and am now in the process of researching non alcoholic wines and beers. If I find any good ones I will let you know.

[PMRpro Ambassador in reply to Robert17]

Some of the beers are OK and it is a question of finding one you like - but I really wouldn't waste your time on non-alcoholic "wines", they are really NOT substitutes! They tend to be sweet - bleugh! Though I did try a non-alcoholic prosecco recently that you could kid yourself with!

My husband's favourite non-alcoholic beer is Moretti - but even here in Italy it has disappeared from our local supermarket. He won't drink most of the others.

[Griggser]

I was also put on leflunomide, 20mg to start with and then reduced to 10mg as I was getting severe stomach pains. Eventually stopped after several months as I was still not able to get below 12mg of prednisolone. Currently on a strange regime of preds being 20mg 1 day and 10mg the next for 6 weeks and then reduce the 10 down to 9 for 6 weeks and keep repeating the drop. I also have been put on methotrexate, (no improvement), azathriprine which made me very ill. I hope you find an answe but agree the giving up alcohol especially at Christmas is difficult but I did for 6 months, anything that might work has to be tried I feel.

[valrene]

Hi I have been on Leflunomide for 3mths now, but I did manage to get steroids down to 5mg with great difficulty but persevered, at 5mg I was shuffling out of bed in the morning it was a real struggle but wanted to get off steroids, started on 10 mg of Leflunomide had awful pains in stomach diarrhoea felt sick but 2weeks later oh boy all swelling in knees,ankles,legs and feet went down could actually see my knee caps, so carried on taking the tablet hair slightly thinner, but I can walk now with no stiffness or pain it's just great, Rheumy kept me on 10mg because of pains in tummy, all that has passed now, the only thing is Leflunomide hasn't helped all the stiffness in the top half of my body from thighs up, not so stiff but still some, have blood tests every month as methotrexate pushed my liver enzymes up, seems to be ok this time, I don't like pumping my body full of drugs but so glad all the inflammation has started to go down, that is my story on Leflunomide just hope if you do decide to take it you have the same response as me wishing you well. Val

[Judigardener]

Hello. I am on Leflunomide. I too was scared about the side effects. I have been fine on 10mg but when I tried to increase the Lef at the same time as decreasing the Pred I ran into trouble. I felt very weak etc. I dropped the Left to 10 and have been fine on that. Am dropping the Pred and am now on 10mg Pred. I have been on steroids for 3 years with this horrid disease. I asked my rheumy about alcohol. I drink very little but my problem was I am a CofE priest and have to drink communion wine on a Sunday. he said much was made of the alcohol issue but a little drink -- not too much was fine. So I think you can have a tipple at Christmas but have glasses rather than bottles of the stuff!

[Robert17 in reply to Judigardener]

Very relieved to have that advice!

[PMRpro Ambassador]

I didn't want to preempt comments - so now I'll say the basic scientific information bit:

Leflunomide was used alongside pred for PMR in a pilot study in Southend a few years ago. 22 out of 23 patients showed a partial or total response - really don't know offhand what partial is supposed to mean as I haven't read the entire paper for a long time. I also don't know how long they followed these patients for so also don't know what the situation was regarding relapses.

However, leflunomide (which is a DMARD) gets no mention at all in the most recent (2015) international recommendations for the management of PMR although they do suggest trialling methotrexate if the patient is willing - there is no really convincing evidence it works particularly well either. They also say

"The group recognized that no recommendation can be made for the use of other non-biologic (ie, conventional synthetic and conventional targeted) DMARDs in PMR because of the lack of good evidence from PMR studies. Hydroxychloroquine was investigated by a single very low QoE retrospective study reporting no benefit regarding relapse rate."

A co-author of the Southend paper was a member of the group who drew up these recommendations. On the other hand, another particularly good rheumy for PMR in the UK says that the ONLY DMARD he would bother trying is leflunomide.

I know a few people who have had to stop leflunomide because of side effects, in one case they were life-threatening. I know one lady who has been on methotrexate and is convinced it allows a lower dose of pred - she has the occasional glass of wine and has never had a problem with any side effects - and several others who have tried it and had no problems at all.

[Robert17 in reply to PMRpro]

The Southend pilot study looks very interesting. I have never been recommended methotrexate so I will give leflunomide a go. I can't leave things as they are!

[PMRpro Ambassador in reply to Robert17]

I forgot to give the link.

rheumatology.org/Portals/0/...

[suzy1959]

I was on Lef. and then my blood pressure shot up and I had a flare, so Prof' Dasgupta agreed that it was not doing me any good. I had also tried Methotrexate with no success. I am currently trying Mycophenelate with not very high expectations of it working, but wanting to try anything at this point as, in 4.5 years I have not been able to reduce the Pred. below 10mgs. and am currently back at 15mgs.

[Robert17 in reply to suzy1959]

suzy1959

Really sorry to learn of your experiences over such a period of time. I was diagnosed 4.5 years ago too but have been below 10mg several times with a very slow taper. The trouble is that it has never stayed below 10mg for very long. There may well be some lifestyle/stress issues also at play which I am in the process of dealing with and I suppose time will tell. I already have high blood pressure and that was one of my main concerns with going on to Leflunomide but like you, I feel it is worth trying anything at this stage. I must say I have not heard of Mycophenelate. I will look that one up.

[PMRpro Ambassador in reply to Robert17]

It took me a good 4+ years to get below 9mg with the occasional flare. Then I was put on Lodotra - and got down to below 5mg for a time. But a flare in February sent me back to 15mg. Am back at 10mg - but lower is bringing back some other back problems.

Of course - you may be a 50% person in terms of bioavailability: some people only absorb half of the dose they are on. Others absorb as much as 90%. That HAS to make a difference.

[zebsky in reply to Robert17]

Hi Robert how's it going on Leflunomide? You haven't been on here for six days.Ive been persuaded to start on it by my GP and it's day 2 for me on 10 mgs.

[Robert17]

Zebsky. Started the Leflunomide at 10mgs a week ago. No adverse reaction so far. It was the same with the alendronic acid so maybe I'm one of the lucky ones. Since Leflunomide is slow acting maybe any adverse effects will become apparent in a month or so. Hopefully not.

In the meantime, I have been testing a few dealcoholised wines. Ugh! I prefer red and the best compromise so far for me has been Little Snapper Red from Marks & Spencer's. It's not alcohol free but at only 5.5% it does increase the number of glasses in a unit! On the beer front, Becks Blue and San Miguel are both OK. although lager is not my favourite tipple.

[zebsky]

Thanks Robert 17. I'm now day 7 on Leflunomide - no side effects yet - a lot less pain and I feel as if I'm walking a bit better. I've been told to monitor my BP and I will have a blood test next week so it will be interesting to see what that shows.I think increasing to 20 mgs will be moment of truth .Hope you' re still going along ok.

[lesley2015]

Hi All, just starting Leflunomide, this thread was about 9/10 months ago I was wondering how you are all doing ?

Thank you

[Robert17 in reply to lesley2015]

Hi Lesley. I started Leflunomide in November last year (10mgs) when I was on 12 mg Prednisolone. Very quickly it gave me bad diarohea on an ongoing basis and it certainly did not help my already raised blood pressure. With a 2 week US coach touring holiday coming up in the Spring I reduced the Lef in January to 5mg. on the Consultant's suggestion. By that time I had been able to taper the Pred down to 7mgs. on the DSNS method. He also suggested I could stop the Lef altogether 2 weeks before we went on holiday with a view to reinstating it on our return. So I stopped the Lef in April and by then was down to 4mgs Pred. Whilst on holiday I was fine without the Lef and didn't need to increase the steroids either despite the tour being pretty hectic. As a result, on our return I asked the Consultant whether I really needed to take the Lef again and he agreed that I need not do so. Since then I have tapered further to 3mg Pred with no ill effects although I have found it difficult to drop further. So, in the space of 6 months I have able to reduce my steroid intake by 75% and it doesn't look as if I will need to take Leflunomide again which given the gastric issues it caused me is a major relief. Was it the Leflunoimde that made this possible? Who knows, but I'm glad I gave it a try despite the diarrohea at first and am very happy now to be on a fairly minimal steroid dose.

[lesley2015 in reply to Robert17]

Thanks for your reply, so pleased you are doing well ....mmmmm my tummy wasn't so good this morning ?? coincidence .... I will wait a few more days.

best wishes

[Bikerdan18]

All I can say is I reacted very badly with leflunamide and still suffering!