Help about to try leflunomide

Help about to try leflunomide

Hi everyone this is my first post even though I have had RA for at least four yrs now .... But I have been a reader and not a poster lol here goes ...

Currently taking 5mg prednisolone...daily

200mg hydroxychloroquine daily

Plus2-3 diclofenac daily plus paracetamol if needed .....but as I have been told late last year I have now got a very aggressive form of RA I now need to up my meds and they wanted to add sulfasalazine which I was told by my Rheumotology nurse this would b the best for me as less toxic side effects as they tried me I'm MTX couple yrs back and I had a reaction which was quite bad very early in my course so my body cannot tolerate strong meds took my body a while to get used to hydroxychloroquine and steroids just getting other bad skin sick feeling and hair loss.........but after seeing my consultant I have come away with leflunomide.....side effects everything what MTX is ...... Plus avoid alcohol.......what's the point of being on a long term tablet and u can't even relax with a drink I discussed my life and life style and was told this drug is best for me ....don't get my wrong I'm not dependant on alcohol I normally only drink whilst out with my caravan rally friends ....which is every weekend lol..... Advise on this ....does anyone have a glass on this med ...?...

I know my RA is really bad at the moment and my hands are becoming very bad but I also work for myself as a house keeper and have also started a ironing service and I'm known to work 10 hrs a day some days and they know all this and looking at these side effects it looks like I'm going to struggle ...... And no work .... No money I get no help in any benefits as I dint think I'm entitled to it ...... Finding each day agony unless I strap my wrist and don't take it off til bed time after my life history what are the side effects of this drug like for anyone else ......pls advise ...I know we r all different but some feed back would be nice ......feel alone sometimes and feel like I moan too much thanks in advance and fir reading this .x

6 Replies

  • I'm in a similar position to, just been discharged from hospital again with bad chest 2nd time in 6 weeks. They think its the sulfasalazine causing the problem so going to start Leflunomide. I also take mtx and I have not really curbed my alcohol intake on this as was told that bloods were being taken monthly so if anything occurred it would be picked up so was told not to worry as long as was sensible and drank recommended amount. But with this new tab as well i'm not sure either and interested to know what others do. Like you i'm not a heavy drinker but I do enjoy a glass of wine a couple of times a .

  • Hi I've been on Leflunomide for 6 months now. I had to come of Methotrexate due to lung problems. I can honestly say that taking Leflunomide is one of the easiest drugs to take. When I was on MTX I used to have to gear myself up to take it as I knew the following 2 days would result in constantly feeling sick. Now I am on Leflunomide there is none of that and apart from loose bowels at the beginning I have experienced no other side effects.

    I love a few glasses of wine at the weekend so like you thought that would be the end of it and I would never be able to enjoy a drink again. At the beginning I did abstain for a while and then stick to only 4 units (2 small glasses of wine) a week as advised in the booklet to see how my blood tests went. As my Liver function tests did not show any damage I now have 2 small glasses on a Friday and 2 on a Saturday. I had my blood test a couple of weeks ago and liver function is still good.

    Of course everyone reacts differently and hopefully Leflunomide will be okay for you. I will continue to keep an eye on my blood tests and if anything changes then I will make changes to my alcohol intake but so far so good.

    Good luck.

  • I have been on leflunomide for 2 months. Like yourself I also like a good drink. My job is working with the public and can be very stressful. So to come home and have a couple of glasses of wine to chill out was normal. But since taking this drug. I have cut my drinking tablets. I have Friday Saturday and Sunday nights as a chill out night with a couple of shandy or a bottle of low alcohol rose or a normal bottle of rose. My livers are ok at mo. Just starting hydrochloroquine and arcoxia for pain. I told this to my rheumatoid dr today. And he said everything in moderation my dear. So I say yes have a chill out night or two. Just keep an eye on your bloods. Xx

  • I look at it from this angle.... many of the drugs we take have the ability to affect our liver so if your LFT's change for the worse adjust the amount you drink until your liver is happy with both medication & alcohol because if your liver has a duck fit this limits what can be prescribed safely in order to lessen any problems. It's no bad thing to have a good patient/Rheumy relationship so maybe it's best to be guided by his/her thoughts re alcohol consumption anyway I would think. If your Rheumy is ok about some alcohol I see no point denying yourself the odd tipple just stay within the units suggested.

    I'm fortunate that I can't tolerate alcohol so it's one thing I'm not concerned about which is just as well as my liver just about copes with MTX, etoricoxib & most of my other meds, pain relief etc. I've been asked more times than I care to remember how much alcohol I drink & I've pretty regularly had the over-the-specs look when I say I don't drink! I've had Consultants ask specifically how many spirits I have a week, usually when I had raised LFT's, reason being in Spain wine & lager aren't "drinking" they're considered an intrinsic part of the Mediterranean diet!!! :P

  • Thanks guys for leaving your comments ...I have taken them all on board and even after a lengthy chat with my nurse who is lovely did say moderation plus I'm having my bloods done every two wks for next 6 wks then appt with her .....haven't got a heavy weekend planned for next couple wks so I will still have a glass or two if I wish but I don't suppose I will b going over the top .....but if I do then that will be interesting results lol.....will keep u posted .....RA HAS TAKEN ENOUGH OF MY LIFE AWAY ......I'm here for a good time ....maybe not a long time is too short ...I'm sure if my bloods are bad they will find something more suitable for my party life style .... But been really nice that you have taken time to reply and give me your views ...I feel like I'm in the club now and I can air how I'm thinking and feeling with no one judging me thanks once again and I will keep you posted .....I'm off in my caravan with my mates for the weekend for a ........omg watch the booze send off lol .......... Tablets to start Monday .....enjoy your weekend and the sunshine folks .🍷🍷🍷🍷👍😀😀😀

  • Hi, I am on leflu and was told by a nurse it was ok to have a couple of units a week but no more. I am like you not a great drinker but do like a glass when with friends. I have not had any trouble since I was told but do try not to drink every week. Hope this helps but it might be best to check with your team.

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