Is anyone on here taking Leflunomide and if so how is it working out for you and what side effects if any?

[maxb]

[miss]

Hi Max have only been taking leflunomide for a month now. It seems to be doing wonders for the RA. I take 10mg a day with sulfalazine max dose. Personally seem okay. Have noticed my skin is more sensitive and I seem to have eczema on my hands. Otherwise it's all good here's hoping it stays that way. Good luck to you truly hope it's as good for you x

[maxb]

thankyou! I was taking 20ml/week MTX injections but came off it as im trying to get pregnant, spoke to my rheumy on wed and said if im not pregnant by end of the year we might give up but i dont like the side effects of MTX so he suggested Leflumonide. I dont know anyone who has taken it so im quite apprehensive! x

[allanah in reply to maxb]

Been on it a year and non problems. Definately reduces my swelling !

[Karen77 in reply to maxb]

My rheumy told me that you CANNOT get pregnant whilst on Leflumonide and that it takes up to 2 years to get it out of your system to safely get pregnant.

[maxb in reply to Karen77]

i'll only start taking the leflumonide if i decide to stop trying to get pregnant, they dont know the effects it has during pregnancy which is why they advise against it

[smokin]

Been on it for a few months. I lost my appetite and have lost ten pounds.I'm also beginning to lose hair!

[DrWhoFan]

Been on it 5 months, lost 7 pounds weight, but no other side effects. Was taken off Mtx and sulpha as told they don't mix with leflunomide . Also been put back on steroids, down from 10 to 8 mg.

[Hidden in reply to DrWhoFan]

DrWhofan

I took Leflunomide with methotrexate for about 10 years with no problems. Only had side effects from MTX when on tablet form, none with the injections.

[sallyeb]

I have been on lefluomide for about 3 years now. I did go off my food a little initially but my appetite did come back. Certainly my hair doesn't fall out like it did on mtx although I do still loose a little. However it works and I don't feel as bad as I felt on mtx .

[JennySLT]

I take 20mg MTX and 10mg leflunomide daily and it's worked really well together. Just be aware of the issues of pregnancy and taking leflunomide, in that if you decide to try for a baby again you need 2 years clear of leflunomide or have to take some kind of flushing out drug which gets it out of your system.

[Hidden in reply to JennySLT]

I was told that the 'wash out' reduces the Leflunomide clearance to about 11 days, but it would still probably be wise to hold of from conceiving for a few months after that. On the medsafe.gov.nz website they say the drugs are cholestyramine or charcoal wash-out procedure.

[JuneRose]

I take 10mg and 20mg alternate days been taking it over 2 years it's the only thing that didn't give me nasty side effects and works 80% which I'm happy about. I've recently been on the BIP trial at guys that seems to b working well too it's worth looking into .

[Hidden in reply to JuneRose]

Hi JuneRose, I wonder if you could ask your consultant for the 15mg dose which is available now? It could save you alternating your dose. x

[TS_1]

Hi,

I've been taking leflunomide for around 3 years and had no problems or side effects. I'd definitely recommend it based on my experience but I guess it's different for everyone. Recently started to get swelling in my knees again, nurse thinks I'm building up an intolerance to it but that can happen with any drug.

Good luck

[lilianisaac]

I was one of the first to use this drug when it first came out in 2000. I had a fantastic 8 years on it feeling the best I'd ever felt since diagnosed in 1975. I never noticed any bad side effects. I didn't experience any hair or weight loss. I hope it works the same for you. Pat

[Hidden]

Hi, I was on mtx for about 2 yrs and came off it due to extreme fatigue, nausea and hairloss. After a couple of months without treatment my hairloss stopped but the RA came back with a vengeance. I started leflunomide 20mg in April but for me the jury is still out. My tiredness has increased but not as bad as with mtx and my hair has started shedding a little but again not as much as with mtx. I spoke to my consultant and he has dropped my dose to the new 15mg tablets which have only just become available. I'm hoping these will help with the side effects but still keep the pain and stiffness at bay. My tastes have changed a lot and unfortunately not for the better as I seem to crave fatty/salty foods but vegetables don't appeal. This is not like me at all and reminds me of weird pregnancy cravings but hopefully it'll settle given time. I have sero positive RA.

[sagil]

I was on leflunomide for only 6 weeks because I lost 15 lbs and I was only at 120 lbs. It didn't seem to work for me either after methotrexate for 4 years. Then I tried Enbrel with side effects so found Actemra injections EOW are working great for me. Hope you find it works for you.

[Hidden]

I've been on it for nearly 2 years alongside injected MTX. No side effects. I had good relief from RA for a good 8 months before it flared up badly and I started on anti TNFs.

[maxb]

mixed response there! I'll only be trying it if i decide to stop trying to get pregnant, i suppose theres only one way to find out if it works for me. Its just the nausea and general crappiness i felt with the MTX i couldnt cope with. Tried the tablet form of that too but i was so bad i couldnt eat for three days which is why i started on the injections

[linda_wig]

I take a combination of Methotrexate, Leflunomide and pain killers, which are (at the moment) working very well, with an occasional mild joint flare up. I have been taking them for some time now and need blood pressure tablets, but I am over 60. So no noticeable side effects.