leflunomide: I have RA and tried plaquenil... - NRAS

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leflunomide

katfisher profile image
7 Replies

I have RA and tried plaquenil methotrexate and cimzia. The only drug that worked was cimzia but I had horrific side effects. My rheumy started me on leflunomide. Has it worked for anyone on here and does hair loss seem to be a side effect?

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katfisher profile image
katfisher
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7 Replies
sallyeb profile image
sallyeb

I have been on lefluomide for a couple of years now. I do seem to still have some hair loss but not as much as I had with mtx. It has worked for me and I have not had a flare for a long time.

Sally

cathie profile image
cathie in reply to sallyeb

What were the cimzia side effects? I'm about to start on it

katfisher profile image
katfisher in reply to cathie

I developed severe palm and foot pustular psoriasis, never had a sign of psoriasis before. It went all over my body but subsided to remain severe on my feet and hands. Went off everything for 6 months and after 18 months of breakouts , my hands are not too bad but palms and soles are still leathery.

chris4321 profile image
chris4321 in reply to sallyeb

hi sallyeb i had lefluomide fro 3 years no hair or skin problem do sometime get diareohea but im got tablets for that i have IBs but i take 20mg but due IBS i have split them up one in the morning one at night lactos allergery i take tabs for that yes i still get the odd flare up but not like i use to i had metrotrexate and set me into depression and climbing the walls came of that straight away

Slumberparty profile image
Slumberparty

Itis the only drug tht worked for me so far, but I had terrible diarrhoea so had to come off it. No hair loss that I noticed.

smokin profile image
smokin

hello,

i'm on lefludamide and just took myself off enbrel. my skin broke out and i had hair thinning from the enbrel. i still have some joint aches but i seem to be doing well on just the lefludamide. i'm not seeing hair thinning after i stopped enbrel.

EmmaS-NRAS profile image
EmmaS-NRASNRAS

Dear katfisher,

Further to the replies below, NRAS has an article on our website all about leflunomide (see link below) which you may find of interest or you can always call our Helpline team 0800 298 7650 who can talk to you further about the side effects of the drug. In addition, if you particularly wanted to speak to someone on the telephone who has been on the drug, we offer a peer-to-peer telephone service where we can try and match you one of our trained telephone volunteers. Again, this is done through our Helpline team.

nras.org.uk/an-introduction...

Best wishes

Emma

NRAS Membership Supervisor

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