Leflunomide - what side effects please?

[HappyDiamonds]

Is anyone able to give me some advice about Leflunomide please which I have been offered today to assist with lowering Pred currently 12.5/10 on alternate days for GCA. I have tried Methotrexate which I couldn't tolerate and more recently Azathioprine which wasn't too bad side effects wise but it was making me drop off to sleep all through the day and I certainly couldn't risk driving. I have read the side effects of Leflunomide and the good news is weightless is one of them lol, but Im not keen on hair loss and that is listed as common. This medication will depend on my blood pressure checks apparently.

[PMRpro Ambassador]

Diarrhoea is a common problem I think, My friend in Scotland developed peripheral neuropathy the first time she tried leflunomide but it did get her off pred for a while. Then she developed the neuropathy and stopped and had to go back to 20mg pred. She restarted the leflunomide at half dose but that wasn't enough and they raised it again. But I think she has also had a flare even on it = I can't remember the details though. If it works it seems good, but in the small trial Dasgupta did with it 30 years ago I understand the patients did struggle with the adverse effects. There is a trial ongoing in the Netherlands but Covid rather got in the way of recruitment.

[HappyDiamonds in reply to PMRpro]

Im VERY reluctant and want to continue with a slow taper. Will be on 10mg of Pred on 1st September if all goes to plan, which is only 15 months from start at 60mg. I have been advised to drop 1mg every 6 weeks from then on. I believe these various dmards take months to work anyway so it seems a bit late to start one. They keep telling me they don't want me to have another flare!

[DorsetLady PMRGCAuk volunteer in reply to HappyDiamonds]

If “they” don’t want you to flare perhaps they should let you reduce at your own pace!

Guess the 12.5/10 alternate days is their suggestion - actually alternate days not really recommended for GCA - was discussed in another post recently.

Agree why add it another drug?

Once at 10mg - guidelines say 1mg every 4-8 weeks depending on patients wishes and disease activity - so suggestion is reasonable- but you’ll have to see how it goes. …as we know, what the book says and real life aren’t always the same!

[HappyDiamonds in reply to DorsetLady]

Thanks Dorset Lady, don't suppose you could come with me to my next appointment 😉

Seriously though, someone is going to have to listen to me eventually ...

[DorsetLady PMRGCAuk volunteer in reply to HappyDiamonds]

Love to…but there’s this thing called COVID about 😊

[PMRpro Ambassador in reply to HappyDiamonds]

I and my rheumy have talked about it but I have to confess I'm terrified of it - as a sole carer I have to be able to function - not afraid to leave the house. I WOULD try tocilizumab because the chances are it would really work and quickly but the DMARDs are a different matter and I have already tried mtx which was horrible. I was more tired and sore on it than I was with untreated PMR!

[yorkieme]

My first sparer was MXT but like you I couldn't cope with it. My second was Leflunomide which to begin with seemed o.k. I managed to reach the full 12 week period that sparers allegedly need to gain full impact but not without some level of suffering. I think around week 7/8 I started with mild diarrhoea and was told by the Rheumy' to take Imodium and this worked temporarily. By week 12 it was pretty obvious that I couldn't cope because the diarrhoea had become unmanageable.

I am now taking Azathioprine which seems to be doing the job apart from a sort of thick head feeling. I want to give it a good shot but I am seriously starting to ask myself what the benefits are,the only serious flare was a result of a much too severe reduction schedule from the Rheumy..

[HappyDiamonds in reply to yorkieme]

Thanks for replying. We seem to have the same reaction to these meds, Aza was the least problematic for me, I hope it works for you. However, I also share your opinion about the benefits and I know only too well about reduction schedules unfortunately. We have to be able to live through the tapering and not be tortured by it. Good Luck

[PMRpro Ambassador in reply to HappyDiamonds]

I think that is something they tend not to think about. They know the theory and not the pactice. My rheumy does seem to think about the downsides maybe being unacceptable. I have 3 doctors who all think QOL is more important that getting the patient off pred!

[Lochy]

I have polymyalgia only, apparently! Tried leflunomide after 2 years as I was also keen to stop breakout pains and particularly swollen knees. I developed an urgency to go to the toilet but otherwise didn’t notice much else. Didn’t appear to make a blind bit of difference to any of my PMR problems. Stuck with it for 18 months hoping it would help then gave up as it was doing nothing and I didn’t want another unnecessary drug. Think a lot of my tapering problems came from tapering too quickly as per GP instructions and my misguided belief that it was all going to be ok!! 5 years later……. I’m only taking 6.5 mg prednisolone and nothing else and I’m a far better advocate for myself and happy to disagree with my GP or rheumatologist or at least have a healthy discussion. They now listen as they know how long I’ve been dealing with this, and all my ups and downs and blood works are in their files.

It’s your decision to try a new drug but from what I’ve read it’s very early days for you and your tapering pretty well so why bother.

Good luck!

[HappyDiamonds in reply to Lochy]

Thank you Lochy for sharing your experience. I totally agree with everything you have said and decided to stick to my guns and carry on with Pred only. Wishing you well with the rest of your tapering.

[Zebedee44]

Hello Happy DiamondsI’m reading your post from a month ago having finally after nearly 5 years of PMR seen an NHS rheumatologist and been prescribed leflunomide.

I’ve struggled to get below 8mg daily pred for more than 3 years although I achieved a taper to 7.5 in preparation for my appointment. The Rheumatologist said I could just stick at that for the rest of my life but how would I know when the PMR goes away if I do that?

The fuel crisis has delayed my getting the prescription and I’m wondering if adding this drug into the mix is worth the posssible side effects or whether to simply soldier on without it.

I would be grateful to hear your own experience with or without leflunomide. Thankyou

[PMRpro Ambassador in reply to Zebedee44]

With regard to the "how do I know it's gone" question - every few months you try a 1/2mg drop to see if that works. If it does - you try the next 1/2mg. And so on. As soon as you see a drop isn't working as well you go back to the dose that did work, wait a few months and try again.

I have a friend on leflunomide - she got off pred altogether first time round but then developed peripheral neuropathy so stopped with an imediate return of PMR symptoms. She restarted with a half dose(10mg) but it wasn't enough and she went to 15mg which also seemed to be enough - but at a later point she had a flare and was back to 20mg pred. I'm not sure what stage she is at now. But she says it has made a massive difference to how she feels.

I think it is a case of try it and see how you get on - a lot of people don't have problems with any of the so-called steroid sparers. I'm scared of the potential side effects as I am a sole carer and must be able to function - were I not in that situation I WOULD try it though providing I didn;t fel worse on it instead of better - as happened with methotrexate.

[Zebedee44 in reply to PMRpro]

Thank you PMRPro, always grateful for your input. The side effects for leflunomide sound a bit unwelcome but if I can reduce the pred dose and achieve relief from some of the PMR and reduction symptoms I guess it is worth trying. Although like many people here I don’t really want to take any more tablets every day.

[HappyDiamonds in reply to Zebedee44]

Hi Zebedee44, I haven't started Leflunomide yet because I became ill with Nephritis. Rheumy wants me fully well before I start this new treatment. Im sure its worth a try and I sincerely hope it helps you. Best of Luck

[Zebedee44]

Thankyou, hope you are well enough soon.