Leflunomide

[RachelJDH]

Does anybody take this. It is a possibility as I did not get on with methotrexate. Your thoughts would be appreciated. Thank you.

[piglette]

I believe several people take Leflunomide on this board. I get the impression that people prefer it, but that might just be my incorrect impression!

[PMRpro Ambassador]

Now you have posted the Related Posts have appeared - have a trawl through them in the meantime. And there is this post from me about the experiences of a member of the Scottish charity:

healthunlocked.com/pmrgcauk...

[RachelJDH in reply to PMRpro]

This was brilliant and positive after methotrexate.

[kp60 in reply to PMRpro]

PMR Pro - Why isn't there testing before starting these drugs to see which might work best for a particular person? I've been trying to decide what to do about a potential return of PMR and a recent diagnosis of RA, so researching nemesis of certain autoimmune conditions. Found that IL6 is usual cause of PMR, and , Actemra and TCIZ are IL6 blockers, Orencia focuses on T-Cells.... etc....

I am probably doing nothing much but going in circles confusing myself, but it does beg the question as to why it isn't established that blood test markers before determing which med will work isn't pursued. Better than this crazy trial and error we all go thru to see what works.

[PMRpro Ambassador in reply to kp60]

I have asked myself the same question. I know I had the IL-6 checked by a Durham doctor though I was never told the results. It is complicated by the fact that some patients respond to one biologic and not another in the same group. Maybe it is not widely available enough and too expensive for general testing.

[kp60 in reply to PMRpro]

thank you. It is complicated!

[nily in reply to kp60]

I agree! I also hate the crazy trial and error method. Cost of tests might be high but cost of trial and error to the person's health is higher.

[nily in reply to kp60]

I read an article about the case of a man who had new-onset RA just after the Covid-19 vaccine in Japan. It seems the doctors made a very detailed blood test and tried to find out which kind of cytokines were elevated. They found that "interleukin-6 (IL-6) and tumor necrosis factor-α (TNF-α), and also of type I interferon (IFN) were elevated at the active phase". They treated him with Tocilizumab and maintained full remission.

[kp60 in reply to nily]

wow - makes me think it can be done!

[nily in reply to kp60]

It seems so!

[PMRrunner]

I took it for nearly two years and it did help me reduce my dose of prednisolone. No issues at first but I then did have issues with peripheral neuropathy which caused me to stop taking it.

[winfong]

I take it (couldn't take Actemra). No side effects. Seems to keep my numbers down.

[golfnutter]

I took it for 5 months. Gave me nausea, loss of appetite and constant indigestion. I also developed peripheral neuropathy which was terrible. It wasn’t for me.

[Maryis80]

I have been on leflunomide for several years, no side effects as far as I can seeRheumy says to stay on it until I am off pred

He calls it a steroid sparer and also prescribed hydoclorquinine as well. Now on .5pred so hopefully the end is in sight. Diagnosed PMR six years ago.

[RachelJDH in reply to Maryis80]

Thank you for replies. I feel I should give it a go as I am stuck on 12mg of pred. The Methotrexate was awful - I understand it is much cheaper than leflunomide so they like to try that first but I am more hopeful.👍

[DorsetLady PMRGCAuk volunteer in reply to RachelJDH]

I know a few months ago you flared when trying to reduce from 10mg to 9.5mg. .. now you say you are stuck on 12mg.

Can I ask how you are trying to taper from there…

Maybe try on 0.5mg a time and a slower taper (if you haven’t already) -see link for examples -

healthunlocked.com/pmrgcauk...

Might be worth a try first rather than adding in another drug… just a thought.

[RachelJDH in reply to DorsetLady]

Hi DL I am following your slow taper of reducing e.g. 6 days 13, 1 day 12, then 5 days 13 and 2 days 12 etc.. What happened was I went from 10mg to 9.5 in January and then had a bad flare which resulted me going up to 15mg to stop it. I was at 12mg when I tried the Methotrexate and had bad side effects so stopped but found I was back to crawling up and down the stairs on my hands and knees. I gave myself a few days on 14mg and that seemed to sort it and I have gone back to 12mg and seem to be stable. I might reduce to 11mg for just one day next week and see how I get on. I am worried that everytime I get a flare I increase pred, put on more weight and then struggle to get as low as previous Last summer I managed to get to 8.5 then my husband had a stroke.... went back to 12mg, then to 9.5mg back to 15mg. I am now hopeful and taking it carefully. I keep a diary which helps. Also hopeful that Leflunomide might help as I am rarely without some aches. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to RachelJDH]

Actually not sure that’s mine -but no matter -all much of a muchness… but trying only 0.5mg rather than 1mg might help.

Good luck with whatever you decide.

[RachelJDH in reply to DorsetLady]

Thank you. Your support is much appreciated and pulls me out of being despondent when progress isn't always linear. Bless you. Xx

[gco34 in reply to Maryis80]

hi have you had diarrhoea? Or hair loss please

[Alebeau in reply to gco34]

Yes to diarrhea but it stopped after I stopped taking Leflunomide.

No to any noticeable hair loss.

[Alebeau]

I took it for a year and now I regret it. Too many side effects including diarrhea, dizziness, and worst of all numb feet and was starting in the hands when I stopped taking it.

I immediately had a huge setback in my PMR journey and have had to start from 15 mg and begin the slow taper. Also coincidentally bursitis in left shoulder began right after stopping leflunomide. I am still in pain from that 8 months later.

I will never take another Steroid sparing medication again.

[gco34 in reply to Alebeau]

What did you change to then?

[RachelJDH in reply to gco34]

I have decided to give Leflunomide a go as i am struggling to reduce the pred below 12mg without a flare even reducing at the slowest rate. I am awaiting an appointment from the rheumatologist which might be a while as I have only just received a copy of the report saying I was giving up methotrexate (dictated on 11th July and delivered today) so don't hold your breath. I will let you know how I get on when I get a chance to try it.

[gco34 in reply to RachelJDH]

I’ve had message to go hospital Monday but I’m afraid 😱 it will cause liver problems and I’m phobia to diarrhoea..,!

I’ve had lots of blood tests this Monday but I’m not sure 🤔 to take new meds !

[gco34 in reply to gco34]

I was In methotrexate years ago .. I had dep injection Monday too !

[Nightingales]

I am having an on and off relationship with it. I have to reduce my steroids so my rheumatologist prescribed it. After two weeks my liver enzymes were elevated so off it for two weeks then back on every other day. Ok for another two weeks then off for hip surgery. Now I have been back on for two weeks but have developed painful tendinitis in my ankles, which is a common side effect with Leflunomide. I guess it will be Methotrexate now. I am dissapointed. Good luck with it.

[RachelJDH in reply to Nightingales]

Thank you and good luck with the Methotrexate, it is great for some but a tricky blighter for others.

[Jackoh]

I took it for about 2 years. I found I had more infections whilst I was on it - colds and chest infections which necessitated me going up again for a short time. So I didn’t find that it helped me reduce very well. I also believe that my peripheral neuropathy developed because I was taking it so I stopped it and decided I would take my taper very slowly only going down 1/2 mg at a time using the dead slow nearly stop method (DSNS) and that has been very successful albeit it slow for me. I don’t mind it being slow as long as it works!! 💐

[RachelJDH in reply to Jackoh]

Oh dear, this is what worries me. I think this is my last go to reduce steroids and if it does not work I am not going to try anything else. The Methotrexate was awful - I was asleep most of the time.. I am still following the DSNS with prednisolone. Thank you for replying.

[PMRpro Ambassador in reply to RachelJDH]

I offered to try leflunomide when it was obvious my need for pred was going up not down - I'd ditched MTX due to the fatigue. My rheumy said no, if anything, it was to be something that he knew worked. I'm not in the UK and although a little bit of me would consider returning to my daughters, I'd lose the tocilizumab. So no.

[RachelJDH in reply to PMRpro]

The consultant said no to tocilizumab they don't like to give it unless you have GCA tho he did say itc would most likely work. Damn. I am going to try a very slow reduction.

[PMRpro Ambassador in reply to RachelJDH]

Not what they LIKE - what they are allowed to do, It isn't funded in the UK except for relapsing GCA and then only for a year.

[DorsetLady PMRGCAuk volunteer in reply to RachelJDH]

Not always their decision -you need to have tried both MTX and leflunomide and been unsuccessful on them as well as relapsing GCA as mentioned by PMRpro before TCZ is approved.

[Alebeau in reply to RachelJDH]

I also had bad peripheral neuropathy after 1 year and stopped taking it.

Set me back 4 years so now at 13 mg and tapering ever so slow.

[Jackoh in reply to Jackoh]

Reading your history on these replies my situation was very similar to you. I got really stuck on 12 mg but did the DSNS only doing 1/2 mg drops. It was very slow but it seemed to work for me. Once I was successful a couple of times it gave me confidence to carry on. For me I did lose confidence and thought that I was not going to be able to drop at all.I also cut out anything sugary, kept to low carbs and started a 16/8 fast. I do love lime cordial but have drunk quite a lot of that today and looking at the label it does contain a lot of sugar, I didn’t realise! and I think I’m sensing that in my body now so that’s another one off the list, jam was the other one. 💐

[Alebeau]

Took it for a year No success.