Leflunomide and how long it's taken to work?

[Rosie_rabbit]

Evening everyone and I hope this horrible wet weather isn't dampening too many spirits?

So finally got back to see my rheumy this Monday after an awful experience with Tociluzimub infusions earlier in the year to discuss the next plan.

I've had RA now for several years and have never really managed to get it under control. I've been on mtx all of the time. I've tried Hydroxy, Cimzia and Abatacept and then the Toci. I'm also taking meloxicam and preds right now whilst I'm trying to find the right drugs for me.

My consultant felt that changing tact and trying Leflunomide with the mtx might be worth a go. He said I would need a bit of patience as it can take 3-4 months to work I know most of the RA drugs can take time to work but he seemed to be suggesting this one can take a particularly long time.

My problem is work. I had a four months off last year. I had just over a month after reacting to the Toci this june, returned to work and felt loads better (possibly benefits from the Toci) and then starting flaring again. I've been off sick now since earlier August and when I last saw my GP he signed me off for 3 months taking me to the end of November ..work was not impressed!! Have to say I was a bit gobsmacked at being signed off for so long. Anyway, I need to get back before Christmas as work are murmuring ill health etc. and I'm not ready for that yet, plus my pay will start reducing and can't afford that either,

So I told my rheumy all of this and he suggested possibly retrying the Toci but in injections (although the it did make me ill, I did feel loads better when the side effects work off just didn't last as I didn't have any more infusions). He said I may feel unwell but it would be more manageable as the injections were weekly and not monthly and it may settle, or not. However my hospital is in he process of switching from infusions to injections and he wasn't sure if they were actually using the injections yet and I won't know till next week when the specialist nurse is back, he gave me a prescription for the Leflunomide but said wait until I hear from the nurse about th injections, if they weren't available to go onto the Leflunomide.

Sorry that was all quite a ramble really when all I want to know is how long it's taken for others to feel the benefit of Leflunomide and if it is usual for it to take a long time. I'm a bit nervous about trying the Toci again but if it works it will work much more quickly. If the injections are available I could still choose the Leflunomide but some shared experiences would be really helpful in my making that decision. Thanks all and sorry about the war n peace!!!

Rx

[oldtimer]

I don't have personal experience, but from what people have said on here previously, you look as though you would get quicker response from the injections than the leflunomide - but I'm sure someone will be along with personal knowledge.

[hatshepsut]

Have never been on leflunomide, but do know people who have had success going on to toci injections. I do hope that you find something that will help you soon. Best wishes, Mavis x

[Livingston]

I started Leflunomide 8 weeks ago, as an addition to the MTX and HCQ I've been taking for years.

The only side effect I have had is a persistent runny nose.

I started to think maybe there was some positive effect about 3 weeks ago & now I am sure. I find my head is much clearer & it's easier to concentrate, stiffness is easing off, energy levels are much improved & for 4 out of the last 5 nights I haven't woken in the middle of the night needing painkillers.

My RD presents with very little swelling so I don't really have much chance of ever qualifying for biologics. I had a bad reaction to Sulfa so I feel like Leflunomide is probably my last chance at feeling really well. I'm hoping that the improvements I've seen already will continue.

Good luck with whatever you end up deciding on.

[Rosie_rabbit in reply to Livingston]

Thank you for posting and I'm so glad it's working for you and quite quickly too by the sounds of things, really great news. Like you I don't get a massive amount of swelling either but somehow last year the numbers crunched up to push my DAS to 6.25. That said, the biological haven't helped as yet!!

There may not be a choice for me if the Toci injections aren't available yet and if this is the case then your story is reassuring.

I have to say that before I went up to see him I knew that the rheumy was considering Leflunomide and I was happy to go on it until he told me about the length of time it can take to work. Having been on steroids in one way or another for over 2 years I've more of a weight issue and I've heard people tend to gain weight on Toci but it's the opposite with Leflunomide. I'm also slightly nervous about taking Toci again after feeling so ill after the infusion.

Thanks again for posting

Rx

[Livingston in reply to Rosie_rabbit]

The patient info leaflet that comes in the box suggests that you might have positive effects from 4 weeks and I have to say I was a bit dubious about that, given that it comes from the manufacturer.

Biggest annoyance so far is all the blood tests - fortnightly for the first 6 months!

[medieval-ali]

Hi

I've been on leflunomide for about 10 years, it took ages to work I had cortisone injections alongside for quite a few years, It has changed the way the diseases is with me now. I now have far less flares and at the moment I'm the best I've been for years, although nothing can guarantee a complete flare free life I'm afraid.

Give it some time and hopefully they will work well for you to.

Good luck

Alison