Leflunomide

[Doublef]

I have refused to take any more methatrexate and am being prescribed Leflunomide has anyone else been prescribed it, I am down to 12.5 pred after 12 months

[PMRrunner]

I took leflunomide for over 2 years but had to stop because of side effects(persistent diarrhea and peripheral neuropathy). I now take 10 mg of methotrexate weekly, I can't tolerate doses above this level. Nearly 6 years into my PMR I do wonder if I could have got to where I am today (2.5mg Prednisolone) without a steroid sparer but hindsight is a wonderful thing

[Angelsmummy in reply to PMRrunner]

Hi,I stopped Leflunomide because of diahorrea and chronic fatigue.Did not agree with me at all.Also had six episodes of blood in eye.Eye hospital were not concerned so do not know whether the drug was to blame or not.Maybe coincidence,but stopped after stopping Leflunomide.Maybe you will be ok on it.Anyway,good luck to you,and hope all goes well.x🌺

[Griggser]

How long were you on methotrexate for and at what dose? It does take at least 3 months to see any benefit and that’s at 20mg apparently. I don’t think it’s a very nice drug, nor is any steroid sparing drug, they all have their side effects. I was very ill after taking Azathioprine and am now allergic to it. I have tried all the steroid sparers over my 10 year PMR journey and have never been below 9mg. I have just this week got back to 9mg again and will need to stabilise at this before starting the next stage of the Dead Slow Nearly Stop reduction plan. I’m hoping my GP will agree to give me a deposit-medrone intravenous injection every 3 months as a short of last resort. I’d never heard of it until I saw professor Hughes last week who has recommended it to my GP. It does seem that you’re in a rush to get off steroids but there is no quick fix. I hope you manage to find something that works for you.

[Doublef in reply to Griggser]

hi I'm inot in a hurry I just want to reduce them which so far has taken 12 months, it is my reumatologist that is advising me. I was very ill and bed wridden on methatrex and was affecting my other medications and lost 2 stone in just a few weeks.

[Griggser in reply to Doublef]

I’m sorry to hear you’ve had such a bad time of things. Let’s hope you and your rheumatologist can get the right combination to allow you to reduce the steroids. All the best.

[Noni71]

I too have been prescribed Leflunomide and am about to embark upon this next phase of my GCA/LVV journey. I couldn’t tolerate Methotrexate as my liver function results were high. I am about to complete my year of Tocilizumab to which I have had no side effects. I am down to 6 and 1/2 mgs of Prednisolone. I have asked if I can begin Leflunomide after I’ve been on holiday for 11 days just in case I have any issues. I am intolerant of many drugs so keeping my fingers crossed that this one works. I will keep you posted as to my progress with the new medication.

[LoveMygarden29]

hello! I’ve, reluctantly, been taking Lefluomide 10mg since last December 2yrs after diagnosis with 60mg pred. I didn’t make any progress with Methotrexate. I was frightened to take Lefluomide and did not take it for 6 months. However my Rheumatologist spelled out the downside of steroids and so I began the medication . So far so good. I have managed to reduce from 7.5 to 5 where I am sticking until after my holiday. Best wishes 😊

[DorsetLady PMRGCAuk volunteer in reply to LoveMygarden29]

Good idea not to reduce until after holiday [that was always my approach] - but maybe slower taper from now on - your adrenals need to be nudged into working again...

To be down to 5mg from 60mg since early 2023 is good going - so not sure in all honesty I'd be looking at any steroid sparer.

[LoveMygarden29 in reply to DorsetLady]

Sorry, I didn’t explain myself very well. I was diagnosed in December 2021 and prescribed the 60mg. I started Leflunomide December 2023 when I was at 7.5mg and now at 5, which I’m pretty pleased about 😊

[DorsetLady PMRGCAuk volunteer in reply to LoveMygarden29]

Sorry though you’d been re-diagnosed in Jan 2023… but as you had reduced from 60mg in Dec 2021 to 7.5mg in Dec 2023 [2 years] wondered why is was necessary to introduce add in a steroid sparer.

But if it’s helping, fair enough.,

[PastelsinArt]

I've been on Leflunomide for almost 2 years and finding it ok. It does affect the bowels, but not so much that daily life is disrupted. I was a bit dismayed by the instructions not to drink alcohol, but my bloods are always ok and I have a small glass of wine several times a week. I was on Tocilizumab before it and my rheumy started me on 10mg of Lef as I was tapering off the TCZ., increased to 20mg after a couple of months. I tried a period of 6months back on 10mg but had a flare , so think that 20mg is helping alongside the pred.

[winfong]

I've been on leflunomide for 2 years or so. I'm down to 5 megs of pred, with no side effects whatsoever.

[Nightingales]

I took Leflunomide for a year and eventually my liver enzymes and inflammatory markers started. rising and the fatigue was bad so I stopped. I gave it a good try because I have been on Pred 9 years. However, I have seen positive results about it on the forum. My remaining choice is Methotrexate so I am burying my head in the sand , reducing very slowly and hoping I can get past the 8.)5 hurdle this time without it.

[Nagswoman]

I refused to take MTX after 3.5 years of feeling permanently sick. Then 2 years later when I moved to a different hospital I was put on leflunomide and feel great. Another GCA person I know did not get on with leflu. We are all different.

[valrene]

I have taken Leflunomide for 5 years, blood tests every month for first three years, then every 2 months now have blood tests every 3 months, liver and kidneys checked and a full blood count, everything has been fine for me in the 5 years. Methotrexate pushed my liver enzymes up so had to stop that. I did have tummy upsets to start with on Leflunomide took about 6 months but persevered then everything settled, I do think everyone is different what suits one may not suit another think it’s all trial and error to find the right one, at least after 4 years on pred Leflunomide help me to get to zero pred

[Doublef]

That is a positive I will take thank you

[Steal]

Yes, Leflunomide effects for me included gut problems and peripheral neuropathy. 10 months since I stopped taking it these have got somewhat better but are not nearly back to normal.

[Oztrax]

are on leflunomide for PMR ?

[Doublef in reply to Oztrax]

no GCA

[Oztrax]

and are you in remmision ?

[Doublef in reply to Oztrax]

no I wish

[Oztrax]

i am still seeking diagnosis for GCA, but have been on leflunemide for quite a few years now, previously sulfasalyzin pyrin and at times methotraxate for my psoratic arthritis. Yet here I am with GCA symptons now. Maybe the DMARDS kept the GCA at bay over time, but now have had a constant headache for nearly 3 weeks and other symptons (head ateries painful, high ESR/CRP levels)

[Doublef in reply to Oztrax]

I hope it gets sorted

[PMRpro Ambassador in reply to Oztrax]

Headache CAN be an adverse effect of leflunomide and it may not start early.

[Oztrax]

thank you everyone who has responded to my posts, my doctors are now testing for ANCA VASCULITIS which is pretty rare, is there a group here for this disease ?

[PMRpro Ambassador in reply to Oztrax]

Vasculitis UK

I see you have found them!!