I have been taking Mtx for about 4 years I'm taking 25mg a week in the form of 10 tablets

But recently it has made me feel so sick that I start to shake before I take it, I know that sounds ridiculous!! but I just can't take anymore and have now missed 3 weeks I'm going to see my new consultant on Monday so hopefully she will have some advice. I just wondered if anybody had any other ideas I take the folic acid but that does not seem to help, This is the first time I've asked anything on this site although I read other fellow sufferers comments regularly.

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  • I used to be on methotrexate by injection. I took it for about 8 years but for the last 6 months I felt awfull for a day or two afterwards. Each week it got worse until I ended up in a and e and then I was admitted to hospital for a week. I am now on enbrel and everything is much better and my ra is in remission. Perhaps your body has had enough of the drug and needs change.

  • Thank you I will talk about different treatments

  • Like you, I've been taking Mtx for 4 years and am on 25mgs. Luckily, it's never made me feel sick but if your feeling sick when you take it, no wonder you start to shake when you think of taking it.

    I've stopped taking it when I've been ill with an infection and after a while think that not taking it has brought on a flare. Maybe your consultant will suggest injections as that bypasses the stomach.

    This is my first post on the site too.

  • Thanks Merne I was nervous writing my thoughts down but it really makes you feel better to know others are going through the same as you.

  • I was nervous about writing on this forum too.

  • Hello Alsie,

    You really have had enough haven't you? You are not alone in finding it hard to cope with the mtx tablets and I really hope that your new consultant can help you on Monday. Do tell her exactly how bad they are affecting you emotionally as well and physically.

    You've probably read that a lot of us have managed the side effects by switching to the injected form of mtx. If your new consultant doesn't mention it then it may be worth you bringing it up as an option. Not taking it for 3 weeks could bring on a nasty flare and you'll have to start building it back up in your system again to get the maximum benefit.

    It's a horrible situation to be in where the cure is as bad as the condition. There are still alternatives out there to explore with your consultant so don't give up hope.

    Take care and let us know how you get on at your next appointment.

    Judy x

  • Hi Judy thanks for your kind words I will talk the consultant on Monday and see if we can come up with something x

  • Hello alsie

    If you see the Specialist on Monday it is good that you have a chance to have a chat, she will have suggestions be open to her.

    BOB

  • I always believe that the cure shouldn't be worse than the disease, and it surprises me how long people sometimes put up with horrific side effects. Theres a difference between it taking a while before you tolerate a medication well, and it producing the nasty effects every time you use it. I would have stopped it too, but I agree, you do need to get onto something else quickly to avoid the possibility of a flare. Glad you have an appointment very soon.

  • Hi, I have just started MTX after a 3month rest as I became so poorly. I think my body had just had enough of it...I.d been on it 5/6 years.. I was on 25mg injection. I seem to be doing better this time although still have terrible vomiting now and then. I have read that injection seems to be a better way to take it. I wish you well and hope it is sorted soon honey. Maryx

  • I was moved to injections when the nausea got too bad but after a year im finding the same with the injection. I find I get worked up and nauseous just looking at my box (I kept this to myself thinking I was being over dramatic). I take metoclopramide before and for a day after the injection. It used to work but now does nothing - I think its in my head now. So can sympathise. Gd luck on monday talking to ur consultant.

  • Hello, I used to think it was in my head too. But when I stopped MTX I was feeling so much better, people commented how well I looked, then the doc put me back on a low dose and all the symptoms came back, including the worry etc before taking, looking at the box. Even the smell when I walked past the cupboard they were in!! Lol so my point is I don't think it is in the head at all.

  • Hi Alsie, I was on MTX tablets and they made me sick. Since I changed to injections and take 5mg Folic Acid on the non-MTX days, the nausea has greatly reduced in intensity and I just got used to it. Try the injections. Good luck, I really hope it'll work for you as well!

  • I also went over to injections and that really helped but I understand the feeling of dread as the Mtx used to wipe me out for several days after taking it. Welcome to the site both of you new posters:-} Don't ever feel that you can't post, nothing is too 'trivial' or 'silly' after all it's how you're feeling and that's as equally valid on here as anyone else's feelings. There's a lot of support on here so be brave and ask away - there's always someone else who's been there, done that, had that experience - you're not alone:-}

    Cece x

  • Hello Alsie, I was on mxt tabs then injection, for 2 ish years, was very ill all the time, sickness, fatigue, goodness a long list. I too was shaking, even crying at the thought of taking the next dose!! Eventually the doc stopped them then put me on Leflunomide , which worked well, until recently. The doc put me on a homeopathic dose? Of mxt, but I have stopped them because all the side affects returned. I wasn't going to put myself through that again. Doc said not much else he can offer me!

    I hope Alsie that you find your new consultanf helpful, and they give you something that suits you? Let us know how you get on.

  • It is never a good idea to just stop any meds. It may seem that the treatment is worse than the condition but we don't know what the effects of stopping without supervision can be.

    Many years ago, I was on a very effective med that was excellent and my life improved dramatically. Unfortunately some people died after using it and it was immediately withdrawn.

    We could find nothing to replace it that didn't cause my stomach to bleed and I was several months without finding anything I could tolerate.

    I would not wish on anyone what happened - I went into an horrendous incapacitating flare.

    I find mtx makes me nauseous and drowsy, so the consultant advised me to take it over 2 consecutive nights. There are also very good anti-nausea tablets you can take. don't take folic acid on the same days as the mtx.

    I hope this doesn't come across as preachy, it just worries me to hear people might stop their meds, or take over the counter meds without checking with their gp.

    I hope your gp or rheumy can sort you out soon.

    reards,

    sandra.

  • Hi Sandra, I am on 25mg Mtx but take 5mg folic acid every day. No one has told me not to take it on the day I take the Mtx. Why should you not take it on the same day. I take folic in the morning and Mtx in the evening. Anne

  • I was told it is because the folic acid interacts with the mtx preventing it working properly.

  • Thank you for your reply. I will ask my rheumy for their comment.

  • Hi Sandra99b, I can understand your concern, no not preachy. When my consultant said he was putting me back on MTX, I cried, because I was so ill when on them previously. I did say to him that I would try them, but if the same symptoms returned, I would stop, he was fine with that. I really didn't see the point of making myself I'll for medication that was ineffective for me. Does this make sense?

  • Hi everyone, I have been taking MxT for very nearly two years. I have tried both Tablets and Injection and are currently taking 25mg in one day but over the course of eight (8) hours. I take the first 2 at 12:00 mid-day, then 2 more at 14:00, then the next 2 at 16:00, the next 2 at 18:00 and then the final 2 at 20:00 (eight o'clock). The side effects are very very small amount of stomach pain on the day. Fatigue lasts for nearly three days and really makes me wonder what life is about sometimes. However tablets this way is so much better than 10 all together or an injection. Hope this helps someone. As a side note the idea of splitting my dose up came from my Rheume nurse.

    God Bless you all.

    Paul

  • I was on mtx tablets for nearly a year not as high as you you poor thing, I felt so sick all the time, I then changed consultant & he immediately put me on injections. He said this would be better for me because tablets only put 40% into your body, but with injections 70% into your body. I had some nausea in the beginning but it is so much better, I have 90% quality of my life back. Also due to the increased dose going straight into my body my RA is improving. I was very nervous of the injections in the begin & don't think I will ever get use to it.

    I hope you get it sorted out, you must let them know how you feel .

    Take care

    Christine

  • Hi All, Just read everyones comments, all very constructive. I too have just swapped to injection form of MTX (first one last week) because of the underlying nausea, on and off from one week to the next, it was really getting me down.. (have been on it for 3 years) I am also on Embrel (also for 3 years). I am only on 12.5 of mtx, (reduced it when i was put on Embrel) but the consultant has said the injection does deliver a bigger dose than orally because of what Christine said above, so hopefully the RA may start to improve somewhat. I was shocked at how easy the injection seemed when the nurse did it (i didn't even feel it go in) such a fine needle, seems pretty easy. Today she is going to help me do it myself. Last week touch wood i've was free of nausea.. YAY!! I don't dread the injections really now.. i think these are far better than to have constant nausea yukky feeling..Great! long may it continue! Good luck Alsie, maybe ask about reducing your MTX and also go onto Embrel as they work well together? x

  • Hi Thanks to everybody who got in touch It made me feel so much better known your not the only one going through this. So I went to see my new Doc yesterday and she was really understanding and although she wants to keep me on the mtx we are going to try it by injections and see how we go, she has also recommended that I go for some physiotherapy so I know how to exercise without it hurting!! So feeling positive again ;0 )

  • Hi, I have been on so many meds I have had active RA for over two years now. You often feel very alone and feel like a bit of a guinea pig. I was sick of medics giving me meds that I knew I couldn't take MTX makes me really sick so they gave me anti sickness drugs that make you sleepy. You can't win! I have just tried rituximab infusions only too be told 6 months later that they didn't expect it to work but you have to follow the process of elimination in the meantime, it's another winter on no medication. Hate ha,ving RA it really does change your life no matter how positive you are it is really tough!!!

  • Hi Andrea really sorry nothing is working for you I agree it is horrible having this disease but we have to stay positive as its the only thing that keeps me going, there is some days when I just want to hide away and cry but I'm lucky I have great friends and work colleagues who support me, so I hope that you will find something too x

  • Thanks for lovely comments, I do have a good support network but the only people that really understand are those with RA like you I keep positive but some days I feel sad at the loss of my old life!

  • Bloody Methotrexate! I hated it. Kept being tried on it in differing doses in combination with different heavy duty drugs because that's what NICE insists on and funding not available otherwise. I went onto self injecting as the tablets, in whatever dose, made me feel foul. Came to dread injecting day - not the actual injecting but how horrible I knew MTX would make me feel for at least three days afterwards. Wiped out, nauseated, not in control of what I was doing, cotton-wool for brains. Would just get round to recovering and injection day would roll round. In the end I just called time on it with my consultant and he has accepted that I can't tolerate this horrible drug. I've had them all over 24 years but that was the one My system really couldn't cope with and I shall never take it again. You have to function and all these drugs may make a difference but only if it's a worthwhile one. Health professionals have our best interests at heart but they don't live with the consequences of their prescriptions!

  • You describe life on methotrexate perfectly,my consultant told me I should be used to the side affect after so many years so I told her to try it and see if she got used to them.by the time you feel a tad better it's time it inject again,it's no life x

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