How long for Leflunomide to work?

[Sapphire1701]

Hi,

Just wondering other people’s experience with Leflunomide as in how long it started to work (if it worked).. I finally came off MTX about 10 weeks ago as could no longer tolerate the side effects.. was severely affecting my mental health..

I had a gap of about 6 weeks with no medication, and symptoms re-started.. then started on Leflunomide a month ago. I’ve only just gone up to the full 20mg and I know it can take sone time, but currently having the worst flare since I was diagnosed (15 months ago) and my knees are absolute agony atm, and no anti-inflammatory or pain reliever is working. My RA has always affected my knees the worst.

I have a follow up F2F on 10 Jan with rheumy nurse, and know I have to bear this pain out while the drugs work (if they work) but just wondered if anyway could share their experiences of when it started to make a difference..

thank you

[medway-lady]

I used to take it and it was superb for years but for the first few weeks it made the pain worse. It was horrid but I took paracetamol and then one morning I woke up and and the pain, swelling and inflammation had gone. It didn’t return but I got a kidney injury and it was stopped. Nothing has ever worked so well since. So give it at least 12 weeks possibly ask for a steroid injection to bridge but be patient. It might do the same for you it was far better than the biologics but takes time. My injury was not caused by LEF.

[Sapphire1701 in reply to medway-lady]

That’s reassuring to hear.. although sorry you had to come off it..

I know I have to give it time and side effects wise I feel so much better since being off MTX but this current pain is the worst I’ve had for a long time. I did have a steroid injection 3 months ago so unlikely I will have another so soon.

Thank you though for sharing your experience with Lef.. I really hope it works 🤞🏼 MTX worked for the disease, as in joints.. but it was so debilitating in other aspects.

[medway-lady in reply to Sapphire1701]

It was the same for me so it might just be it’s getting where it needs to go and working. I kid you not but for a week my hand was so painful I could not cut up foot and cried a lot. Then it just went.

[bpeal1]

Leflunomide has a very long half life so can take a while to build up in your system. It can take up to 12 weeks to start to make a difference. At your F2F ask for a steroid injection to tide you over.

[CarolKate]

It took about 3 months to fully work but there was a huge change when it did. I hadn't been able to bend for 2 years and then I could, a huge bonus, as well as it working well with all my symptoms. I had to stop for a while as I'm sensitive to many medications and developed a few side effects. I restarted at 10 mgs and I tolerate that well.

I have Chronic Kidney disease but it hasn't affected that. I've been on it for over a year.

[Teddybear999]

I have been on Leflunomide for just over 4 months and haven’t seen much of a change as of yet am contacting Rheumatologist this week Xx

[Bookworm55]

I started 10mg leflunomide over a year ago now and didn’t make much difference to my symptoms so my consultant said there was no point in increasing the dose. I’m still on it though(?) along with sulfasalazine and the biologic amgevita which don’t seem to be doing much either. I too have a rheumatology appointment on 10 January so will see what the consultant says then….

[Sapphire1701 in reply to Bookworm55]

Oh bless you.. well I hope your appointment goes ok. Seems all the drugs affect everyone so differently..

I hope they find something that works for you soon 🤞🏼

[spartacus101]

I've been on 20 mg leflunomide and 400 mg hydroxychloroquine for three months now, after having to come off methotrexate due to the vomiting. Just as I changed medication I was able to limp a mile but since then there are days when I can't stand and have had to crawl upstairs. I was initially offered another steroid injection after having one six months earlier, but I don't think it would have made much difference in my case. Yesterday was the first day I have been able to stand comfortably. I hope you have a productive meeting with the nurse.

[Sapphire1701 in reply to spartacus101]

That sounds really tough, I feel for you.. the steroid injection made little difference for me either..

I hope in time things may improve for you. Take care

[Durrell]

Hi Samphire I can’t give any info re drug, but I also suffer with knees being my worst affected joint. Sometime ago I read an article re castor oil & inflammation. I just by chance had a bottle in my cupboard so gave it ago. I can say it did help & I use it regularly now. Don’t get me wrong not a miracle worker but after using for a few days I did feel the difference, yes it’s thick & sticky but when I’m in a bad flare I’ll try anything. Do a little research it could help… 🌸

[Sapphire1701 in reply to Durrell]

I’ve not heard of castor oil for joints but I will def give a try.. thank you

[Green230461]

it took three months to kick in for me and then it worked for many years. Good luck 🌈

[Mozart150]

Hi it didn’t work for me - nor did Methotrexate and two anti TNF’s but it was insisted I stay on them all for 6 months (Leflunamide) about a year and had loads of Prednisone. I’m on a JAK now. It’s just finding the drug that works for you while following the Nice guidelines etc. Good luck. If you have had a lot of steroids they should give you a DEXA scan xx

[Kleinrot]

Hi! It was actually my husband that was subscribed the Leflunomide by his Rheumatologist. Long story short---it was a nightmare but we finally figured out the Leflunomide was making him sick. Two years of being weak, tired, URIs, a depletion of his white blood cells that caused an infection inside his nose from our dog, cancer cells in his lungs, nose, ear, head...overall his immune system was lowered and anything that he was exposed to, he got. He got off of the Leflunomide and it all went away...like some miracle. Uh, well, his Rheumatologist retired and we never went to another.