Leflunomide

[Seashoreshanty]

Hi inam back again after being in remission for approx six months. I have pain in wrists elbow knees and hip. Went to rhummy today and i am starting leflunomide, had methotex last time so just wondering if anybody has info on this drug re the side affects?

[medway-lady]

I take it, its great. I did have a lot of pain for several days after about a week. Like agony, ice packs, heat packs up crying . You get the picture then woke up, no pain, clear head, swelling going down and best of all energy, lots of it. For me its a wonder drug, no other side effects at all I take it with Omeprazole to protect the tum. I know its in the system for a long time and you stop it if having an infection and that includes a bad cold, but thats about it. If you get a really bad reaction it can be washed out but it is for me superb. I'm in remission and have no sign of RA at all. If I did not swallow that triangular pill every night I'd know things would be awful.

Don't read the info leaflet or you're never going to take it and if you do remember that if its a 1 in 10 chance you'll get this or that, its really saying that 90per cent don't get it.

I hope that makes sense .

[Hidden in reply to medway-lady]

Hiya,

I been offered this treatment, well thats if I decide not to have cimzia, so how long have you taken this medication for, I have two weeks to decide.

[medway-lady in reply to Hidden]

Since July 2015, and I had blood clots relating to RA so it was imperative that my RA was got under control. And the meds were compatible with Riveroxaban.

[5dot]

Hi, I take 20mg leflumonide & have for about 2& half years.Make sure you have bloods done (every 12 weeks ) & b.p.check. I'm fine except too skinny & I take Lansoprazole for tummy & I'm also a Rituximab infuser. My hair does come out a bit but nothing drastic. Leflunomide hit the spot for me. Hope they help you too x☺

[MickeyJoints]

Hi, I stopped MTX about 12 days ago as even on injections with MTX after about 9 months nothing was happening and I was desperate for something new. I've now been on Leflunomide for 7 days. I didn't start it immediately as I'd had a flu jab and while not rough with it, I was a bit 'seedy' so delayed starting it.

I've had no noticeable side effects but no improvement in RA symptoms either but very early days yet. I'm taking note of the notices about infections and all that, but generally not too worried about. Trusty little BP machine is at hand. If you had a similar advisory notice with a car, you'd never get into one!

Heartened to read other's positive experiences with it and I hope I have a similar response. I really, really do.

[Seashoreshanty]

Oh thanks so much for all the comments, feeling a bit more positive about taking this new drug. I start on friday. i will expect a few side effects, but it does sound like this could be the drug for me, will let you know in a couple of weeks. Thanks again

[Lorin]

I took leflunomide for 5 weeks. Had good control of my joint pain and my hair stopped falling out but it drove my BP up so had to go back to Methotrexate and plaquenil. Good luck. Hopefully it will give you relief.

[Seashoreshanty]

Thanks will try it and see what happens.

[ezlong]

I've been on Leflunamide (Arava) since April. I've had no side effects. I was on Prednisone of 10 mg and decreased by 1 mg each 2 weeks. Just as I had ended the Prednisone had a flare in my neck. Back on Prednisone and decreasing again. My Rheumy is starting me on Orencia infusions next month and still continuing Leflunamide at the same time. Bottom line is I have no RA symptoms at this time and no side effects from Leflunamide.

[Selfie]

I too felt very concerned before starting LEF. I have been on LEF for 8+ years alongside 3 different biologics. With first biologic I was in drug induced remission so reduced dose of LEF to 10mg per day. Then bio stopped working so I moved to different one which never quite worked as well so I stayed on 20mg dose. Now in 3rd bio and doing great but every time I try to reduce the dose of LEF I begin to stiffen up, pain & fatigue returns so the drug is definitely working for me. I have no hair loss and all blood tests return normal. I hope it works as well for you

[Seashoreshanty in reply to Selfie]

Thankyou for the info it sounds so positive. Hope it keeps working so well for you to. I start today, so fingers crossed, i can hardly walk this morning so stiff and swollen.