Leflunomide or Anti TNF

Sorry to ask again but I have to make a decision next week and I' just don't know. I failed on both mtx (hair still falling out :-( ) sulphasalazine (rash) my rheumy nurse said go straight to anti TNF and has talked me through the different types and showed me the syringes etc I passed the first assessment next one next week. I just have this thing that anti TNF is so new and with all the news about thalidomide medication recently is making me even more apprehensive. What do we know about it? The longest person he has on it is only four years what if it turns out to give you other conditions. I know no medication is without side effects but this one seems more frightening. Any advice gratefully received once again. Thank you xx

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  • Hi, I can understand your concerns and these were mine as well before starting. I am on both Anti-tnf and Leflumomide. I take the tablets each day and inject once a week, I do this for PsA, the anti-tnf is Embrel (Etnercept).

    I have been on both since December 2011, I have had no sickness, hair has stopped falling out, and am feeling much better within myself. This combination suits me, you will have to find one that suits, as reading the different blogs, other people have had to try different ones before they found 'the' one.

    Good Luck,

  • Thank you Georje, interesting about the hair loss wonder what helped. I know I have to take some medication as being off everything since early July is really beginning to show me again that I will need medication.

  • I have read that anti-tnf is showing up in testing as having less side effects and less long term problems than some DMARDs. Sorry I can't recall where I heard or read this but I think it was somewhere pretty reliable. The article said that anti-tnfs have been shown to increase life expectancy of those with inflammatory arthritis and ideally should be used in early RA treatment but won't while it's still so horrifically expensive. If you are offered it as an option I would go for it but at the end of the day all you can do is research and form a conclusion. How about taking a low dose of both? Tilda x

  • Yes I agree with tilda -apart from the dosage which may have to be decided clinically. Anti tnf isn't that new, I've been on the same one, infliximab for nearly ten years. It's made a huge difference to me, ra hasn't gone away, I should have tackled my weight earlier and got more exercise and stopped working too. But you are well monitored while you're on it and I'd recommend trying if it's on offer

  • The writing box has gone very small!

  • The anti TNF Enbrel has been going for well over ten years now. Research had not detected any ill effects. I have been on it for three years and my life has been transformed. No side effects I can detect. Go for it!

  • I have been on Embrel since Jan 2008, apart from some side effects which may or may not be caused by the drug I have had no problems. Without it I can't move. You can try it, Embrel only stays in your system for a week so if you don't like it you can come off it quite easy.

  • Hi,

    I also take one of these drugs Remicade. I have a 3 hour infusion every 7 weeks. I have been on it for about 6 months, and sometimes I forget I have RA. It has been good to me. I guess the old story is if it hurts too much you will try everything. Good luck Tricia

  • Oh by the way years ago I took the Leflunomide and it had said your hair could fall out, but to my surprise my straight hair turned very curly. I loved it! But it started messing with my liver so came off of it. We are all so different huh!

  • I am also on anti-TNF and leflunomide (and MTX). Previously took a combination of MTX and leflunomide and I have had no problems at all with leflunomide. In fact I think for me it was more effective than MTX.

    Everyone's reaction is different and hopefully, like me, you will find the combination really works for you.

    Jo

  • Thank you all so much. It is so encouraging to hear all your stories. If I pass the next assessment I will go for the anti TNF I have the choice of humira, cimzia or enbrel. Although I have been in two minds about taking any medication ( ask Tilda!) two and bit months of nothing has made me realise I can't go on without anything, i needed the Forced break to remind me how horrible the pain is and how well the dmards had actually worked. Lets just hope they don't change their minds again.

    Thank you again, review on the 19th September wish me luck :-)

    Lou

  • Hi there,

    A bit late but just wanted to chip in as I've been thinking a lot about this as am starting to have problems with MTX. Hospital isn't very encouraging about possibility of me getting anti-TNF but has suggested that or Leflunomide.

    Anyway, the thing I'm weighing up is the slightly increased risk of serious infection from anti-TNFs as against the liklihood of fewer side effects. I'm not so worried about the long term issues as they have been around for quite a while now and more recent research seemed to say that the cancer risks are not as high as they had thought. Anyway, everything has some risk long term and a knackered liver can be just as life threatening.

    I'm also a total wuss about needles, and do travel a lot so having to think about cool bags and customs is an issue for me. Also I live quite a long way from an A&E department so infections are a worry, and as a result I'm moving towards trying Leflunomide to start with. So I think it's not just the meds you need to think about but also your own lifestyle. This disease changes stuff enough, so I can really do without more RA bother. Polly

  • anti-tnfs may not be used that frequently in the UK, but in the US there are a lot of people on them, and there has been a lot more study done on the frequency of side effects and risk. The results seem to be that actually anti-tnfs are much lower risk than they first thought they were. I think the thing with them is to just be aware of anything unusual and report it straight away. If it were me, I'd go straight for the anti-tnf - they have a lot better record of actually helping, and it could be a miracle drug for you. Travelling with anti-tnfs does take a bit of extra thought, but airlines and hotels are used to folk carrying meds like that.

  • Thank you for your reply, will give anti TNF a go, or I hope I will, just be my luck that I don't pass the next assessment and then that's it for this time, having scan on hands this morning will be interesting to see what that shows.

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