Lefloumide versus Methotrexate

fionaLondon

Hi
I've been on combination therapy, Meth 15 months, Hydroxy 11 months, Sulphalalazine 3 months. Couldn't get on with Sulph so stopped and now in flare up, so back on steroids and slightly higher Meth. Have had trouble with higher doses of Meth since I started so Rheumy is thinking of stopping everything and starting me on Lefloumide. Would be grateful for any feedback on Lefloumide
Thanks all

salamander

I would be interested too as it is a possibility my rheumy is going to add it into my mix. What didn't you like about the Sulph?

fionaLondon

Hi
The sulph made me nauseous and altered my taste buds/palate, lost my appetite, also developed itchy skin. I tried reducing it to two a day but still had issues. After 3 months I decided to stop and the problems stopped within days, so definitely the cause. Will know in a couple of weeks whether I'm starting lefloumide

salamander

Thanks Fiona. Not that keen to take anything else (currently on Enbrel and Pred.)

dreamdaisy

These meds vary so much from individual to individual in what they achieve. This is my take (for what it's worth).

Meth - not enough benefit but still take it because the bloods are good. That and the humira must be doing something but I can't feel it.

Sulph - not enough benefit arthritis-wise but take it because it keeps my psoriasis at bay. Over the years I've gained an altered taste, foul tongue and tinnitus but relish the clear-ish skin.

Leflunomide - tried it and felt that the cracking heachaches it created were not worth the effort. No benefit gained.

I know of someone on here who takes meth and lef and is doing relatively OK. Don't be afraid to try it, be conscientious about the blood tests and I hope it proves to be the one for you. DD

Starburst

I've been on the combination of 10mg leflunomide and 20mg injected MTX for 8 months. It's been the only combo that's got the disease under control after 3 awful years. I'm not in clincal remission but I am miles better than I was. I get the occasional headache from lefluonmide but it's bearable and I am definitley more prone to infections on them both. MTX has always given me mouth ulcers but they're bearable too. I can only rave about leflunomide because it's made the world of difference to me. My rheumy feels it's the combination that's made all the difference but we are going to begin to lower the dose of MTX, so we'll soon find out. That said, everyone is different and responds differently and I would always say; read the leaflets, talk to your consultant and rheumy nurse (if you have one) and if it's safe and medically, it's ok for you, then give it a go.

Leflunomide can be tough on the liver, so my consultant was reluctant to prescribe it in combination but the risk paid off. Getting regular bloods is really important, as I'm sure you know.

Some rheumies start people on a leflunomide loading dose and then, reduce down but I didn't do this and thus, had far far far fewer side effects and it reduced the risk of an immediate adverse reaction. So, do find out if your rheumy will start on a very high dose and ask to see if the alternative may be possible.

Hope this helps a bit!

EB100

Hi, I am on Leflunomide and I take it with Enbrel now. When I was first taking Leflnomide I took it alongside MTX. but had to come off the MTX both, as bloods came back incorrect. When I started back on drugs it was just Leflnomide then the Enbrel was introduced this combination suits me better.

Mat48

I am interested in this combination too. I'm on injectable MTX - been taking this for 18 months now but have only ever made it up to 17.5mg and have recently suffered from severe abdominal pain plus extreme nausea so have once again come down to 15mg - so far so good. I think the MTX interatcted badly with the Omaprazole I was put on so now taking Ranitidine instead. Having transabdominal scan in ten days time so hopefully will get to the bottom of what's been causing it.

I was on Hydroxy for a year but stopped to see if the nausea improved. It didn't but as it seemed to make no difference whatsoever to my RA I have stayed off it so just on MTX now.

I couldn't take Sulpha either - got large swellings on my neck and ears and an all over purple itchy rash and also suffered taste and smell problems so not allowed that again. At the moment the MTX is working really well on my joints but I am still getting terribly sick and it's only week 1 on the lower dose so I suspect I will need something else in a while. Thinking about Leflunomide - I wonder about reducing to lower dose of MTX eg 10mg and introducing Leflunomide alongside it. I have heard it's not very good for those with blood pressure problems? I have slightly high blood pressure although don't need meds for it but this was a concern - as well as the liver. I think as long as we get our blood taken regularly it's reasonable to try these drugs out and see how we go.