Fed up with Methotrexate...want to stop taking it completely. Some advice please?!

I'm experiencing more and more side effects of the mtx injections (tolerated 20mg weekly for about 5 years now) but have recently noticed that I'm suffering increased bouts of nausea (for days on end so much so that I can't eat, despite anti-sickness tablets and folic acid) and I have begun to get site reactions from injections, large red blisters that itch and can get sore and infected.

I'm also aware that I'm flaring more often, in new places too and am living on pain killers just to get me through the day/night. I feel that I'd like to stop the mtx and try something new. There was the hope that I could take something along side the mtx (hydroxychloroquine/sulphasalazine) so I could reduce the dose but I really feel that I'm ready for a complete change as it would be better for me both physically and psychologically. I couldn't take the hydroxychloroquine as it affected my eyes and so it looks like sulphasalazine might be my next option...but how effective is it on it's own?

I'm just a bit fed up of feeling so lousy, I haven't felt this down about my RA for ages. I had a really good summer and I know that these are the worst months for me so, whilst waiting for an appointment with my consultant, I thought I'd ask if any of you lovely, helpful people had any good, honest advice? What might my next option be? Should I ask to try a biological? Is that even an option in Cumbria...anyone know?

20 Replies

oldestnewest
  • Poor you. You need to speak urgently to your consultant about the problems you are having. It may be that the MTX has come to the end of its useful life as far as you are concerned but there are other things the doctors can try. I am on 25mg of MTX which seems to suit me at present although it plays havoc with my teeth!

    Don't just stop taking it without seeking medical advice first. If you have been on the MTX for so long it may be that you should be asking to go onto anti Tnf meds.

    I also couldn't take hydrochlorquine and came off it after 6 months as it affected my eyes as well. Don't know about sulphasalazine as never been on it but I know some on this site have been so they may be able to answer your query,

    But please get an urgent appt with your consultant to discuss all this first.

    Best wishes. LavendarLady x

  • I'm waiting to get an appointment with my consultant. I tried to get in to see my RA nurse sooner but she is on holiday for 2 weeks and so I just have to wait...it could be a while...I was due an appointment last August but they didn't have a space 'til October!

  • I Agree completely with Lavender lady... they night try you on another dmard as well as they suggest or a different one altogether.

    Good luck

    x

  • Thanks Summer, I guess I will have just to wait and see!

  • Hi there, nice to see you pop up on here again, although sorry that it's because you're feeling crap. I take MTX, Hydroxy and sulpha - and adding in the other two didn't really help me lower the amount of MTX I take as it was just that I seemed to need to extra boost that the Hydroxy & sulpha gave. And if your RA is being cantankerous on 25mg MTX by injection it seems really unlikely that it would be fobbed off just with Sulpha. but who knows, as each person's RA seems to have a mind of it's own as far as which drugs will chase it off. So after 5 years it may well be biologics for you. Although changing over to another DMARD like Leflunomide could also be an option perhaps as that's supposed to be as effective as MTX? In theory biologics should be available to all in England who meet the criteria, but you don't want to have to go without anything and go into a flare to show you need it. So it would be because you've failed on DMARDS, which might need you to push a bit. But first step as LL says is getting to see your consultant...and maybe they'll have a cancellation you could get if you keep phoning. Good luck. Pollyx

  • Ok, thanks for that Polly, all good to know. I think I'm just ready for a change but am too frightened about what'll happen if I stop the mtx and wait for something else to kick in, if it even does. I'm so much better than I was 5 yrs ago and don't want to go back there if I can help it. A steroid shot 'to get me through the winter' hasn't really helped much, my consultant said that if it improved things then it might show that need to add sulpha rather than replace mtx but seeing as I have not felt the benefit as much as in the past I'm concerned that she'll want to keep me on mtx and try a few combinations of dmards first....this I would be ok with if I were not feeling so ill with the mtx. Argh, why so complicated?!

  • You shouldn't have to put up with severe side effects, especially if the MTX isn't even working well. Get your GP or rheumatology nurse to try and get you an earlier appointment to see the rheumatologist and make it clear to them that you aren't prepared to put up with that any longer, and you want to know what other options there are. Make sure you ask about anti-tnfs - they probably won't mention them otherwise, but actually they are probably the ultimate option and work incredibly well for most folk with minimal or no side effects.

  • I will be asking about all my options...I've had a 'new consultant' for about a year now and feel that after only two appointments I've been judged as having fairly insignificant issues. I'm not going to be fobbed off and want to know where I can go from here. When I get an appointment that is ;)

  • to echo Polly, nice to see you here but sorry it's because your not so good, I can't give you any better advice but wanted to say hello as you were someone who helped me when I was newly diagnosed, if it wasn't for yourself and the rest back then it would have been a much harder time!

    Anyway, big hugs, wish you get something sorted soon xx

  • Ah, I was a bit worried about popping in again as I've been away for so long, mainly for fear of having to admit that I'm as fed up as I am by needing to come back! Hope you are doing ok? What's all this about pink rock salt? xx

  • I would think hard about trying Leflunomide now perhaps? It's an equally strong a drug to MTX and some people find it really works for them. A change in meds to Leflunomide and Sulpha as a combination maybe enough to stamp on your RA now? If anti-tnfs are suggested by your consultant then that's great but usually they like people to have tried and failed on three DMARDs before they put people on them because they are so expensive. It's good to do your research and I fully agree you that you need a break. I get sick with MTX (injectable 17.5) and with Hydroxy too but have upped my folic to try and address this and it seems to be working. But I think these side effects build up and can arrive (and depart) quite spontaneously because for the first 6 months I had no side effects with MTX even in tablet form at a higher dose but now I really struggle. Tilda xx

  • Thank you! I know I'm best to try the DMARD route before anything else as I don;t want to use up to many options too soon. I have only been offered 3 out of the many so it would be interesting to gauge consultant's reaction to Leflunomide as it has never been suggested. I just want to avoid getting into a pickle, one way or another ;)

  • Oh bless,... I understand were your coming from by the look of your pic you have small kiddies,...... and i do know no one wants the pain of RA or any other pain when looking after little ones, I wish you all the best & hope you find the medication that is right for you, x I have had RA for 16 years,

  • I'm in Cumbria too and go to Carlisle for treatment. Biologics are available in Cumbria.

    I'm on tociluzimab at the moment. I started on sulphasalazine but was allergic to it, NTX did absolutlety nothing so I went on enbrel which was brilliant for about 9 months then stopped working. I've also had humira which I was allergic to, golimumab which gave me drug induced lupus and made my RA worse and rituximab which didn't work. PM me if you want.

    Hope you get an appointment soon.

    Mary

  • Thanks Mary, my treatment is based in Kendal, sometimes Lancaster and it can be a bit hit and miss. Sounds like you've had a rough time of it but am glad you've found something that suits you now. The more I look into other DMARD's the more I scare myself with the possible side effects and think I might be better off sticking to the MTX and putting up with the sickness...

  • I had no side effecets which enbrel other than a constantly runny nose and it was wonderful while it worked. With tociluzimab I get really bad headaches for about a week then a couple of better weeks then the week before my infusion my RA seems to get worse again. It's not having much effect yet but hopefully it will build up as I've almost run out of other drugs to try! If you're noy happy with your consultant maybe you could switch to Carlisle, my nurse is brilliant and the consultant I see seems pretty good.

  • hi sorry your feeling rotten i do agree with all the above. i have to say i am on sulphasalazine hydoxy,naproxen and omeprazole i cant have MTX as i have had hep b. Nurse tells me this will stop me from having biologic hope she is wrong or at least i will be able to try something otherwise might be a case of up the greek with no paddles !!!!!!!!!!!. Enough of me the above is working quite well at the moment for me take care best wishes from Miss xx

  • I agree with all you lovely people I have had RA for 16 years and been on and tried a lot i am still on Sulphasalazine, + Steriods, i have been on Humira injections but reall bad side efects ,I am 73 years old and still trying to get the right medication that dose'nt make me feel worse from side efects, I have to go in April to my RAC and find out what i can try next ,i don't think that there is a easy salution but we have to keep trying,..... Emandedmum, You need to get on the Phone and tell them you can't wait for that one NURSE OR DOCTOR there are others you can see,.... KEEP ON TO THEM you should'nt have to suffer like you are, Bless x

  • I couldn't take me Methotrexate because it was affecting my liver but I had pill form. Then they tried the areva and I had a bad allergic reaction after a couple of weeks again pill form. I came off that myself friday night and called the doctor first thing monday morning. Which they were okay with me coming off of it. But each time I had to wait for it to get out of my system and take just prednisone for a couple of weeks. Right now they have me on xeljanz for about a week so far no side affects and that is in pill form.

  • Then again you might give the nontoxic treatments a chance. There are so many for whom mtx has stopped working or doesn't work who have been able to through AIP diet get their inflammation controlled. Might be an idea to look into. You can only win by taking care of your gut.

You may also like...