lefluonimide

[K2013]

really need some positive stories please. After a year of methotrexate, sulphasalazine and then hydroxychloroquine, then metojet I’ve been taken off all cos they’re just not working. Wont put me on biologics due having had cancer twice so off to start lefluonimide. Please give me some positive feedback, feeling gutted as I was hoping to go on to jak or biologics. Consultant says no due to history

[Madmusiclover]

JAKs and biologics work differently. Are they both contraindicated for you? Good luck.

[K2013 in reply to Madmusiclover]

yup both were taken off the table when I asked about biologics. Gutted as I feel trying another dmard is a sideways step. Will b more optimistic tomorrow. 🙄🤦‍♀️

[Madmusiclover in reply to K2013]

it works for many on here so good luck. X

[smilelines]

I had good luck with leflunimide. At first I was on a 20 mg tablet but switched to a 10 mg in the morning and 10mg at night. This prevented running to the washroom.

[K2013 in reply to smilelines]

thank you - good to know. 👍

[smilelines]

I hope it works well for you. It was so much better than the methotrexate for me.

[Blodynhaul]

Hi K2013,

Sorry to hear of your concerns and medication limitations. I was on Leflunamide (LEF) for 7 years, after being on Methotrexate (MTX) for 13 years. I was VERY happy on LEF - it controlled my RA very well & I had no discernible side effects (unlike MTX). It was really disappointing when, for some, reason it just stopped working around Jan 2021 (around the time of covid vaccine, but will never know if that affected it working). (I was put on Biologics in 2021 as the RA was completely out of control, but no luck. Dec 2021 I was put on the Jak Filgotinib (FIL) and although some bad adverse effects, it thankfully has mostly helped the RA inflammation & pain).

Anyway, I had a Great experience on LEF - so truly hope you will too! Good Luck

[K2013]

thank you

[Anniebl24]

I have been on LEF for several years and think it is great. I agree to split the dose 10 in the morning and 10 at night. Good luck with it.

[Ferret18]

sounds as though you’ve had similar meds to me. I started on hydroxychloroquine with methotrexate, then sulfazalazine was added. Changed to metojet as I needed a higher dose of methotrexate. That really didn’t agree with me and I was nauseous for a couple of days after each jab. So changed to Leflunomide. Been absolutely great for me. No side effects and is currently keeping symptoms of RA at bay.

Good luck with it

[K2013 in reply to Ferret18]

thanx for that, I’m really needing to hear positive stories. Just feel I’m watching life pass me by. Need a kick up the butt! 🤣

[Ferret18 in reply to K2013]

It can be worrying when one drug doesn't work and you have to try something else. Hope you get it all sorted soon.

[Legley]

Hi

Ive been taking leflunomide for 3 years. No issues lost about half a stone but know stabilized. Excellent at controlling Rhuematoid. Only issue raised bp so tak blood pressire pills small price to pay

[K2013 in reply to Legley]

I could do with losing some weight after the steroids 🤦‍♀️🤣

[Jollyjill]

How utterly frustrating & disheartening this must be for you and as a fellow RA sufferer I feel your pain! Have they increased the dosage for MTX? Ask them to take you off everything & try this alone at the max dose with Diclofenac as backup to get you through the pain

[Wannabeabago]

I’m on 10mg of Leflunomide and it’s been great