Leflunomide

[gemmalaura]

Does anyone have any experience with Leflunomide as a steroid sparing drug as my rheumy wants me to try this after refusing methotrexate. She wants me off pred even though I am managing on a low dose of 4 1/2 so she wants to introduce leflunomide as a steroid sparer. I am again reluctant to try this with the documented side effects and prefer to keep trying with the 7 week half mg taper although I do feel I have reached my level for now.

[DorsetLady PMRGCAuk volunteer]

Now you have asked the question, you can see related posts.. sure you will get direct answers as well.

To be honest, don’t think there is any point in adding in a steroid sparer as you have got as low 4.5mg without one.

[gemmalaura in reply to DorsetLady]

Thank you Dorset Lady. That's where I am coming from.

[PMRpro Ambassador]

If you are at 4,5mg pred it is daft to want to use another hefty drug like that and I know a few rheumies are beginning to say the same. I would say no,

This

healthunlocked.com/pmrgcauk...

is one lady's story of working her way through the so-called steroid-sparers. She has been very patient with it and to be fair she has got to a lower dose of pred. But not off pred - and the journey has been rocky at times.

[gemmalaura in reply to PMRpro]

Thank you PMR pro This lady's journey has not been nice and I sympathise with her. Not one I want to go on

[PMRpro Ambassador in reply to gemmalaura]

Me neither!

[123-go]

Hello, gemmalaura. I have been taking 10mg Leflunomide daily for the past 3 years since scans and ultrasound imaging showed inflammation in my aorta together with an aneurysm. The Leflunomide wasn’t prescribed as a steroid sparer but as a more potent drug to control the inflammation so your situation is different from mine. Like DorsetLady and PMRpro I really can’t understand why Leflunomide would benefit you when you are on such a low dose of prednisolone.

[gemmalaura in reply to 123-go]

Thank you Stay well

[winfong]

I'm on leflunomide as Actemra gave me some nasty side effects. Seems to be working just fine. My numbers are good, though I tend to have symptoms return if I go under 7 megs prednisone.

I have PMR and extra-cranial GCA/LVV. Been going on 4 years now.

[PMRpro Ambassador in reply to winfong]

What were you on when you started the leflunomide?

[winfong in reply to PMRpro]

I'm assuming you mean pred. If so, I honestly don't remember. It was awhile back, though I think I remember it being around 7 as well.

The lowest I've ever gotten was 5, and that was with leflunomide. After 2 bouts of Covid last year at this time, I've found I can't get lower than the 7.

[PMRpro Ambassador in reply to winfong]

So has the leflunomide actually achieved anything was what I was really after?

[winfong in reply to PMRpro]

I'm guessing the good numbers amount to something. It's also hard for me to tell what's due to adrenal issues when I go down and what's due to the vasculitis.

[gemmalaura in reply to winfong]

Good luck on your journey Thanks

[PMRrunner]

I took leflunomide for over 2 years and it did allow me to reduce my pred dose but I had to stop due to side effects. I was on around 10 mg when I started and was struggling to get any lower. Nearly 4 years on and knowing what I do now about very slow tapers I wonder if I could have managed without it. With what I know now I wouldn't consider it at your low dose but rheumatologists can be very persuasive. Good luck with your decision

[gemmalaura in reply to PMRrunner]

Yes that's right Thank you

[HelenDaisy]

after a couple of flares I reluctantly started Leflonamide and it has worked, as far as I can tell, as I’ve had no flares since and I’ve slowly tapered to 3mg. I’m a bit stuck now with low adrenal function.

I did have a nasty bout of rheumatoid arthritis in my hands that I treated by increasing my prednisone but my rheumatologist said if it happens again he’d rather increase the Leflonamide instead.

I have regular blood tests for my liver function and have had no side effects.

[gemmalaura in reply to HelenDaisy]

Thanks for that hope it continues to work

[Travisdecember]

I have been on Leflunomide for almost 3 years, have had PMR for 5 years. I was started on it as I had difficulty getting below 9mg prednisolone, even though I was following the DSNS taper. It has worked for me, although I still have had flares, but am currently at 5mg. There are lots of side effects from Leflunomide I have not experienced all of them. Many of them are only when you start the drug. The one that has stayed with me is I have to move my bowels daily at 4 or 5 AM, which tends to wake me up for the day, so this drives when I go to sleep. I struggle with this. Overall though, Leflunomide has benefited me as it permitted me to get below 7mg prednisolone. I would agree though with what everyone else has said - if you are at 4.5mg without it, its not worth the side effects.

[gemmalaura in reply to Travisdecember]

Thanks for your detailed reply

[Alebeau]

My experience was very negative. While I did reduce to 5.5 mg the side effects were too severe and my rheumatologist stopped it after a year.

My PMR came back with a vengence after that and am now back to 12 mg Prednisone and struggling to reduce.

Side effects included diarrhea dizziness and peripheral neuropathy.

[gemmalaura in reply to Alebeau]

Oh dear sorry to hear that. Hope you can reduce. Thanks

[PMRpro Ambassador in reply to Alebeau]

I think if the truth were told that is what happened to Lorna - she got off pred altogether first off and then the neuropathy appeared. Stopping the LEF had her back to 20mg pred and even when they reintroduced it at a lower dose, she can't get off pred altogether. I've been on pred longer than her and at a higher dose but I'll take that for the lack of bad side effects. Maybe I'm lucky but pred really hasn't been bad to me.

[gemmalaura in reply to PMRpro]

And lets hope your good luck continues.

[PMRpro Ambassador in reply to gemmalaura]

I'm on a far lower dose now - thanks to Actemra/tocilizumab. Quality of life is all - as my rheumatologist said this morning and developed a plan to deal with the intractable sacroiliac pain I've been dealing with for a couple of years but which has been worse the last few months. I can manage it - but other doctors say "oh no no no" and leave me in pain! Including the Pain Clinic!!

[gemmalaura in reply to PMRpro]

Hope your rheumys plan works for you

[PMRpro Ambassador in reply to gemmalaura]

Thanks - so do I!!

[Jackoh]

Hi - a bit late coming to the party!

I was on it for about 18 months I think. I stopped taking it for two reasons. One was I kept having infections so I had to keep increasing the dose of pred when I had an infection which negated any progress I had made in reducing in the meantime.

I also developed neuropathy in both feet which I think was due to this. I therefore asked to be taken off it.

I was in the region of 12 mg when I was on it but have since, using just the DSNS method of reducing, have managed to reduce to 6 mg, going on 5.5 mg ,albeit very slowly. I have been on pred since 2015.

I really think that it is unnecessary to put you on another drug as you have been successfully reducing your pred on your own using a slow method. I feel this is definitely the way to go and can’t really understand why the Rheumatologist would want to introduce Leflunomide at this stage at all. Xx💐

[gemmalaura in reply to Jackoh]

Yes that's my sentiment too Good luck

[Marko666]

Hi Gemma Laura, I have had pmr for nearly 3 yrs and can't get below 14mg I tried methotrexate had upset stomach for a few days but after that no side effects but after 4 months did absolutely nothing to help me drop , I have taken my first leflunomide tablet today so too early to know anything yet wasn't going to try it but I can't stay on this high dose ! If I was on a low dose like you I really can't see the point taking another drug i would happily be on your dose on just prednisolone.

[gemmalaura in reply to Marko666]

Yes thanks Good luck

[LemonZest11]

Hi gemmalaura, I think you have your answer! Most on here think you are doing really well to be on 4.5mgs without any other drug. Why put things in jeopardy by introducing something that comes with side-effects? I convinced my rheumatologist to allow me to stay on actemra instead of introducing methotrexate or leflunamide, which she wanted to do. Be your own advocate if you feel strongly, sounds like you are doing well.

[gemmalaura in reply to LemonZest11]

Yes I will thanks Good luck

[Skysey]

Hi Gemmalaura. I’ve been on Leflunomide for some time now and I have found it brilliant. It enabled me to get off prednisolone. I take 10 mg tablet in the morning daily. I have regular two monthly blood tests at my GP surgery to check my liver, fbc and inflammatory markers. So far all has been good. My rheumatologist is hoping to take me off Leflunomide in the spring but I’m nervous about it as I don’t want to go back onto high dose steroids if I have a flare. I would say to give it a try. You will be monitored closely on it anyway. However, I understand your concerns.

[gemmalaura in reply to Skysey]

Yes thanks Good luck

[Nightingales]

Hi Gemmalaura. I have been on Leflunomide for about 7 months now and my experience has been up and down. After 6 years of PMR and roller coaster Pred it came back to haunt me and I got Avascular necrosis. My rheumatologist highly recommended a DMARD, (he had never mentioned them before.) My liver can only tolerate every other day and I have had Achilles tendonitis. I did manage to go slowly to 10 mg from 15, where previously I would flare with a big spike in ESR and CRP. But now I am off Leflunomide temporarily because of a sinus infection. I have increased pred by 2.5 for a few days as I am in such hip and back pain. So, I agree with the others. If I was at your low dose I see no reason to add another med with the subsequent guessing game of what is causing what and the risk to other organs.

[gemmalaura in reply to Nightingales]

Yes totally agree Good luck