Leflumomide/ etanercept

[CJFC1717]

can anyone give personal experience re the above RA drugs please

[KittyJ]

if you put those into the search box and filter for NRAS all previous posts about them will come up 😊

[Belle76]

my experience with leflumide on its own no other medication was in part great it helped my joints on the flip side it upset my stomach that I would get worried about leaving the house, great for the waist line 😂. I was on it for about 6 months maybe less.

I have etanercept (benepali) injections been on them for a few years now and I have my life back, I very rarely experience pain I now run and exercise. I have the odd tiny flare but that’s if I over do it. The injections sting a bit sometimes but it’s a small price to pay. I also have sulphasalazine along side this.

[Brikel in reply to Belle76]

I could have written this post. Exactly the same for me

[Belle76 in reply to Brikel]

glad someone else is doing well on it, as sometimes it feels like you’re the only one doing great and it makes you feel like the odd one out

[CJFC1717 in reply to Belle76]

thank you Belle

[eastbournelady]

Leflunomide increased my blood pressure and made legs swell so make sure you monitor yours just in case and etanercept I only had in conjunction with methotrexate did help for a while but not enough. Everyone reacts differently to the drugs hope they work well for you just be vigilant on new medications.

[CJFC1717 in reply to eastbournelady]

thank you

[Hidden]

This is my current combo, and the only treatment that’s had any significant benefit to me since diagnosis almost 3 years ago. I have psoriatic arthritis, rather than RA, and leflunomide has a good - albeit mostly anecdotal - reputation for PsA patients in particular. Prior to this regimen, I tried mtx, mtx and lef, and then lef and adalimumab (imraldi), but with very little benefit beyond what the left was able to do on its own. I’ve been on the Benepali (etanercept) since May and noticed significant improvement in pain and swelling within three weeks of starting on it. Have had to have a 3 week break as a result of being quite unwell with covid, and I can’t wait to get back on it as I’m already starting to suffer again. No real side effects from either now that treatment is well established.

[CJFC1717 in reply to Hidden]

thank you Charlie hope u puck up soon

[Cal48]

lefluomide ok nothing to report having been on it over a year. RA seems to behaving on it also take methotrexate,

[CJFC1717 in reply to Cal48]

thank you Cal48

[Jackie1947]

Leflumomide had in early days of RA but it was changed to Sulphzasine which suited me better. Etanacept or Benipali I inject weekly. Tolerate that very well with no side effects .

[Green230461]

I was taking leflunomide for several years with sulphasalazine because I could not tolerate methotrexate. It worked very well for me. Hope you have success too💐

[CJFC1717 in reply to Green230461]

many many thanks

[Al1954 in reply to Green230461]

hello from argentina!! Did your hair fell off with leflunomide? I was on enbrel but after had breast cancer

[Green230461 in reply to Al1954]

no problem with my hair! I was also given omeprazole to protect my stomach and given vitamin D tablets to help with bones and teeth. I was on this for over ten years and it was great until I caught shingles and then it just stopped working- so now I am on a biological Baracitinib which is the best thing yet Drugs have improved so much over the last ten years. Good luck with your journey you have become an RA warrior so fight for everything you can. 💐Don’t give up. 🙋🏻‍♀️

[RAexperiences]

leflunomide I was on about 6 months (with methotrexate). Towards the end I feels absolutely cured of seronegative RA (never knew I could feel so good) but had such severe diarrhea I felt too scared to leave the house. I was on etanercept with methotrexate and never really felt it did much at all. Had better luck with Adalimumab…best wishes!

[marie66]

Leflunomide worked well for my symptoms and pain. I was on it for 6 months but began to have really bad skin discolouration on my face and neck - it looked like a dark pregnancy mask on my face and a really blotchy tan on most of my neck! I had to come off it, shame really as it did help with the swelling and pain. M x