Hi all am just going to start leflunomide and was wondering if any of you are on this. They have stopped sulfasalazine and will be using this instead. Am still on mtx 20mg and hydrochloride and 2.5steroids. have been getting a lot of pain recently but nurse said am not bad enough for biological drugs and to use this instead. Hope your all doing good.
Thanks for listening.
Carol x
Hope all goes well ☺
Every document, paper, and research doc. Indicate the need for early and aggressive treatment of RD. Why then must you wait for further erosion? Once the damage is done it cannot be reversed. In Canada a nurse does not give advise on drugs, doctors do.
In the U.K. we have specialist rheumatology nurses that can give advice and prescribe under the supervision of a doctor. We also have drug pathways that the doctors follow, with rules about when people can be offered biologics. For an individual person that can be hard if you don't qualify, but for society overall the fact that costs are controlled is a good thing as it maintains free healthcare at the point of service. We have a national insurance scheme, so the most someone in the UK pays extra is £104 a year. I guess you pay a lot more than that.
I've been taking it for two years its great, but be warned on this stuff it gets worse, then like magic gets better. It has for, me been a life changer. Just remember it takes a fair while to work and do not read the PIL if you're going to read that you won't swallow it. And to be honest I think the PILs sort of suggest side effects anyway. I take at night with a glass of water and it has had no side effects since the initial pain ones.
It worked well for me for 10 years x
Be sure to watch your appetite with Leflunomide......I lost 12kgs on it...just didn't feel hungry.
Rheumy took me off it immediately I realised how much weight I'd lost.
18 months later still not back to old weight.
Good Luck....really hope it works for you !
Hi Carol, the last drug I tried was Leflunamide, having tried MTX and Sulfasalazine, both of which affected my liver badly. The Leflunamide seemed to be working, but after 3 weeks my BP was dangerously raised, so I would recommended that if you can, you monitor this at home. I'm now starting on biologics thank goodness, so hopefully less side effects! Good luck with it.
I'm due to start this week. I'm hoping is better than the sulphasalazine. I'm flaring really bad at the moment. Good luck on your new meds
I'm also on MTX & steroids having tried both HCQ & SSZ, the former stopped working after a year & the latter I wasn't able to tolerate despite trying to continue on it with an antiemetic added.
Like you I've been told I'd be unlikely to qualify for anti-TNF's/biologics though as I'm due to start tapering steroids after 4.5 years & having tried before & flaring I'm not sure the LEF I started in November will hold me well enough. I don't believe it's helped me that much if at all, as a general rule my feet are good indicator of how well controlled or not I am & they're quite swollen & painful at present. I can't increase my MTX as my liver objects so LEF is more or less the last chance saloon for me, unless my Rheumy magics up something, maybe one of the old DMARDs. That said my next appointment will be with her SpR who I have to say is the best I've seen so if anyone will talk straight with me re treatment (when I question her about if I maybe could qualify for) anti-TNF/biologics she will, if I don't manage without steroids.
We'll both have to see I suppose but of course I hope LEF does work well for you.
Hi. I am on Sulfazalzine and I started Leflunomide as well three weeks ago after some really bad flares and all has been well, no side effects as yet! I read Dr Michael Moselys excellent book @Clever Guts' and have now started a probiotic diet and am feeling much better, so not sure if its the drugs or the diet! Either way I'm not risking stopping either! Good luck, as far as I can say you've nothing to worry about.
I started on Lefluminide 2 yrs ago,,,had a lot of side effects,,weight loss being the most,,4 stone,,,itching was another,,and my skin is now paper thin,,,,but everything settled eventually,,,I still have the odd days where I don,t want to eat,,,so have cuppa soups,,,,but my rhumy doctor is pleased and doesn,t want to see me until next yr,,,
Hi Carol I had very bad reactions from Sulfasalazine and luflonomide and have now been started on Biologics. 1st onexit Benapali didn't agree with me now I am on Humira seems to be OK.
Much less painful and reducing steroids so fingers crossed. Have you asked to try Biologics they are reluctant to prescribe because of cost. But you have better chance of them working.
They said I was not bad enough for biological drugs. Than you all for you thought. Carol X
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