MTX injection update

Well the reason I haven't been around for last four days is I've been bed with sickness ( both ends) head playing mind games, shivery and sweating.

I really thought the injections wold not give me the same side effects as the tablets.

I can't lose 4 days every week with these side effects. I just don't know what to do.

The injections started at only 7.5 every week, then increasing 2.5 every month.

I have until Friday to decide if to take another one. Has anyone else gone through this?

Do the side effects decrease with time?

I'm on frolic acid 5 out of 7 days a week.

I really hope someone can suggest something

Hope everyone enjoyed the good weather

Xxxx

14 Replies

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  • I found the injections don't make much difference to my nausea. I've just injected an hour ago and am feeling really horrible in a very particular way that only MTX does to me. It did make a big difference to my RA though and last week I hardly suffered any nausea the next day whereas the week before the nausea was appalling for almost the entire week. Sorry not much help really but I think some people just cannot tolerate MTX however it's administered. Not sure I can but I think for me there's something else going on and the MTX is just worsening it rather than causing it. Tell your rheumy you want to try something else ASAP. Tilda x

  • So sorry injections werent the answer and that you have been feeling so bad. We place so much hope into the meds and its awful when they dont work. Others more knowledgable on here are always saying that there will be something that works for you. Its just a matter of time though and thats the hard part as we want to feel better today.

    Im sure others will have more advice soon but I am having problems with the site and new posts arent showing up. Found your post by accident. Not sure if its a general problem.

    Tracyxxx

  • Hello there and so sorry to hear you've had to stay in bed with side effects :( I was sooo hoping injections would agree with you more!!

    I couldn't tolerate oral or injectable MTX so maybe like me you're just one of these people that don't get benefits from MTX or any benefits you would be getting are overshadowed by extreme side effects? I say that you don't need to put up with this, there are other DMARDs out there that might agree with you more. Have you tried DMARDs other than MTX before or is that your first one? I am now on Leflunomide and I don't get the nausea and yucky feelings from it the way I got them from MTX. There are a range of other DMARDs as well that could be an option for you:

    nras.org.uk/about_rheumatoi...

    Towards the end of the list there are also anti-tnfs listed so you'd have to look from the top up until Ciclosporin.

    I hoping you're feeling a bit better and please don't think you have to put up with this as part of life with RA - there are other drugs that can be tried and they might not send you to bed feeling yucky like that!!

    lots of love and hope you're feeling better,

    Christine xxx

  • it is really dif,I feel very sorry for u. I tried steriod injections into knees ended up in hospital.

    Bad reaction. I have decided rightly or wrongly no drugs. I going to take pain killers and swim. See how I go. I've decided drugs will mess me up I would rather be in pain and get out,than be in bed sick. Ithis is a personal choice others are so poorly they have to try every thing and some drugs work really well. J ust got to find the right one. For me my tummy be ok and being able to enjoy my food and work is more important. I wish you all the best this ra is really dif to sort out.

    Take care

  • I found I was unable to tolerate MTX, even with injections, at the dose that would control the RA. Having tried sulphasalazine and hydroxychloroquine (allergic vasculitis with those), leflunomide was then rejected because of peripheral neuritis and hypertension.

    So now I'm on azothiaprine. Nausea is bearable with this, but I have just had a bad flare up and had to double the steroids again.

    The rheumy doesn't think I'm eligible for biologics - sero-neg, inflammatory markers controlled (on steroids), and too old (although my sister, five years older than I am, with a similar history is being considered for biologics). hey ho!

  • Oldtimer, one thing puzzles me here ........ I'm sero-neg & my Rheumy thinks I'm eligible for Biologics and of course one element of the DAS score is inflammatory markers & although mine sometimes dip for a while they are usually high. However the only time they have come right down was when I was on steroids. I've refused routine steroids now on the grounds that they seem to mask what's really going on plus long-term use worries me - my Rheumy accepted that gladly.

    I find it hard to believe that low inflammatory markers due to steroids are a valid reason for refusing Biologics. As far as I know just about anyone's inflammation goes down on steroids ....... but I thought they were no longer considered the long-term drug of choice in Rheumatology? Do you ever feel like getting another Rheumy I wonder?

    Luce x

  • Sometimes the NICE guidelines seem to be the modern version of ducking possible witches and only assuming they're innocent if they drown..... For a long while I was hovering on a DAS score just under the magic 5.3 basically because my inflammatory markers are stable as a rock even when I had something like 19 tender joints. And I was told that they have to go on the numbers so their suggestion was that I come off all meds and then my markers would probably rise and I could be scored again. And you have to be scored twice 6 weeks apart and then wait for decision...so possibly 3 months or more with RA going wild? Not much of a choice really is it? And I guess same with steroids, although I too thought most docs avoided them if they could.

    So yes, exerting your rights for a second opinion sounds a good plan old timer... Px

  • Apt analogy sadly. 19 tender joints ..... it is madness.

  • Fidget that sounds horrible....poor you. Personally I'd start campaigning for a different drug as that sounds like too extreme a reaction to put up with it. For me the side effects did decrease over time, but I only had nausea and headaches not actual sickness or sweating. Hope you get a response quickly. Polly

  • Sorry to hear your problems with the MTX. I have had a terrible time with sulfasalazine & MTX, long story for another time. I had ulcerative colitis/crohns for many years before developing arthritis too,, which was made to flare uncontrollably with MTX. So I really feel for you having such a bad time with the gut. Only you can tell how bad it is, but in support, I know that it can be worse than the pain & disability from arthritis, and if anyone just thinks it's like a bit of an jippy tum, don't listen.

    Stick to your gut feeling (pun intended) on what your best treatment is. Just to say that for some of us the digestive problems can far out weight any benefits of MTX for some of us. Personally, sticking with the MTX to be a "good girl" for the prescribing Dr was the worst thing I did. Now no longer on MTX it has taken 3 months to get back some degree of normality with the gut. This could be because I have the underlying bowel problems, of just the amount of time it takes to get the MTX out the system. Good luck & I hope you feel better soon, whatever your decision.

  • Hi Fidget, I like you could not tolerate MTX, started on 10mgs tabs and the side effects were horrendous- think I lost about 6 weeks of my life, started on SC injection and like you lost four/ five days a week to nausea and just feeling horrible. Never got past 10 mgs, and my gut reaction was I had to stop, however my liver backed me up on this. I did find Folic acid 10mgs day before, and for two days after, that might be worth trying. Also the anti nausea meds were changed. How are your blood results? Whatever happens you must sit down with your rheuamatologist or nurse and discuss it all. You have as much input into your treatment as the consultant. It may be you have to change to another DMARD. There are so many and perhaps you will do better on another one. As far as biologics are concerned the protocol, which I believe is nationwide, is two failed to respond DMARDS and then biologics will be considered and again I suppose it does depend on so many factors that how long that takes to get started on it will be dependant on those factors

    Do not lose heart, difficult as it can be, there will be a solution, patience is the thing that is required until it can be found.

    Lots of hugs and sympathy

    Xx

  • hi fidget, so sorry you have been so poorly, I would ask to be put on something else sounds like an allergic reaction to me. I was on the tablet form when i was first diagnosed with RA and had the sanme reaction as you i was told to stop it straight away as it was a severe reaction to the meds and Rhuemy changed my meds immediately. I would have another chat with your Rhuemy as the side effects should not out weigh you RA symtoms. Hope your feeling better soon . soft hugs Lena xxx :)

  • Sorry to hear you have been so unwell you sound like MTX does not agree with you. As it does not with me they can not get me above 10mg as I get really ill and have to come off it.I have been saying to my Rhuemy I still feel so sick but they do not want to listen, my doctor is so angry he is refering me to a different Rhuemy. I am no were nere as bad as you, you poor thing but I do feel sick up unitl I take my Folic acid and the night of taking MTX I get really hot. I have to change what I eat because certain foods make me feel sick even the smell of food makes me sick. People at work say I pregnant, at 51 I don't think so, but the symptoms are like having perminant morning sickness!!!

    The great thing about this site is that you are not alone, and peolple are a fantastic support it has been invaluable to me.

    Hope you get sorted soon.

    Christine x

  • Thank you all for your amazing answers. Consultant has changed my meds.

    Now on Hydroxychloroquine for 2 weeks then if all ok introducing Sulphasalazine.

    Just hoping this works.

    All I want is to be pain free, not tired and find my mojo

    Xx

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