Tough time on methotrexate

Hi everyone

Have now been on MTX tablets 4 weeks and am now up on top dose 25mg. Took it last night and have felt absolutely dreadful today. Giant headache which I presume is due to liver trying to filter out high level of chemicals circulating and really bad abdominal pain and sore stomach. Feel sick and tired. Abdo pain means I need to lie down as worse when upright. Its not reflux as too low down right from base of ribs to caesarean scar! Plus I know what reflux is like and this is different pain.

I've had the same symptoms every day after MTX doses with no other change in my life so I put these developments on the MTX. If this is how it is going to be every week I'm not sure I can do it as it is very painful.

I have review with rheumy nurse on Tues to see how getting on. Last time she was as sympathetic as a sledgehammer so I feel apprehensive already. I asked for injection MTX not oral due to long standing stomach problem but she told me MTX does not affect stomach and just persisted with (cheaper for NHS) tablets prescription.

What can I expect at review? Will I have to persist like this for 12 weeks before thy will discuss options? So far my RA experience is of being left to endure things. Can I ask to change already?

I'm also on hydroxy Neither drug is showing much effect on joint pain or swelling. I am less stiff than i was but put this down to big dose of steroids still being in my system.

Feel beaten down by horrible side effects.

32 Replies

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  • Oral mtx does effect your tummy. Please stand your ground. You should not have to suffer because your rheumy nurse did not graduate at the top of her class.

    I am not a medical profession, but her response is ludicrous. Can you see another nurse?

    I would also advise you to have your folic acid readjusted.

    All the best to you

    PS I don't mean to sound so aggresive, but jeez....don't we suffer enough pain with this dang disease?

  • Hi, thanks. I would like to see a different nurse but don't know how to achieve that without upsetting this one - its a small department so I feel if I get it wrong and still have to deal with Nurse Sledgehammer then she will make it even harder for me to get different drugs as and when I may need them. There seem to be so many bloody hoops to jump through. I was sent for hydrotherapy with physio (by different and pleasant nurse) but when got to actual appointment the physio told me oh you can't just have that because of course everyone would like that, you have to meet the criteria. Sorry, but I thought the criteria was that I'd been referred for it already because I have RA??!! But no, i have to satisfy yet another person that i have suffered long enough before i can actually get helped. A Powerless patient, that is how I feel right now.

    Its like with the drugs, you have to 'fail' at a certain number before being considered for a different type. I was told this at my first appointment.

    Sorry, feeling quite bitter right now! The NHS is such a battle. We used to live overseas and I much preferred a system where you paid a small fee direct but got much quicker care.

    How can someone change nurse diplomatically? I am new to all this. Thanks

  • Hi there.

    I'm on mtx for about a month and got bad headache and sickness but took a dose last night with anti sickness med stemitil and have been fine...no headache no sickness though am a bit more tired than usual. I'm not in the UK so not sure if it's the same for you but I was told injections are immediately available if mtx gives bad side effects from taking orally and my understanding is that it does or can affect the stomach very much although the pain you describe may be related to your liver? Ms sledgehammer may just need reminding that you are.the patient and she should be working with you! It might be an idea to bring someone to the appointment with you if you don't already for both moral support and to speak up if needed...that way if she takes offense its at them not you so to speak...you know play good cop bad cop sort of thing. it can be very overwhelming dealing with RA the last thing you need is to leave an appointment feeling unheard and ignored or bullied into continuing a treatment that's not it for you.

    Best of luck 🌸🌸

    Sharon

  • I should of mentioned that I live in Canada. You have to "fail" so many drugs here too...but there is a reason for this & it isn't always money. Bioligics may sound wonderful, but they can have dangerous side effects. The whole idea is to take the least toxic or powerful drug, at the lowest dose to control this disease.

    Someone from the UK will be by soon to advice you how to change nurses.

    All the best to you and no, you don't sound bitter. You are upset with dealing with nurse Sledgehammer.

    Suex

  • You should be able to change if you are in an HMO.

  • I live in the states and I can't be put on humira or embrel until I have used a few of these other harmful drugs. It's all in control of Big Pharma and insurance companies

  • Hi Mickeysmom - Yeah - I live in the states too, and I found the same thing. MTX before anything else. But it CAN'T be the price. I was on Oracept injectables, and they were $6k a dose which I just think is obscene and would have been unaffordable except for insurance... My co-pay was $50.00 a dose, so $200 a month.. Then after the first year, insurance decided I needed the cheaper stuff - ha ha. I fooled them and got off of it all together...

  • same for methotrexate injectable. I can't afford $200 a month. Eight now since I had the surgery the only thing I can take for my RA id Advil and tramadol. xtra strength Tylenol and tramadol for osteoartthritis. Thanks for the feedback

  • Yeah - The tramadol is about all I can take - Can't take NSAIDs or Ibuprofen, and am really, really allergic to Tylenol. And since almost every narcotic out there is mixed with Tylenol, I can't take them either. So I have some Demerol for flares. Hope you are feeling better today..

  • Hi, I'm so sorry for your pain. I am experiencing a flare in my right wrist and the back of my right knee this morning. Now I just saw my surgeon and asked him if I could take Advil for flare ups. My rheumy said no because she worried about it being too harsh on my tummy but if my surgeon said it was ok than she didn't have a problem. I only need it for the flare ups and it usually calms them down. Tylenol

    did nothing with the tramadol. After my reversal I am going to try and get by with just the Advil and tramdol as I think they are better than the prescription stuff. It won't slow down the disease but until I can get on humira or embrel that;s the way I am going. Good luck, I hope you find relief, healing hugs for you

  • And to you too! Hope you are having a wonderful day, or at least a pain free one!

  • Hi Blightyfivestar, I'm afraid I don't have as much experience as others on here who will have better advice on the Rheumy logistics front. But you sound like you're having a rotten experience and really need some support. It might upset Ms Sledgehammer but you're in pain and distressed and if she's lost sight of the fact that the primary function of any health professional is to relieve suffering then you might have to be the one to remind her. I really hope you get the help you deserve. Please let us know how you get on x

  • I'm so sorry that you are feeling 🤢You seem to have increased mtx very quickly to the highest dose! Maybe they'll allow you to decrease it slightly? I'd also push for injections (which can usually be less -i.e. maybe 20mg) as it gets absorbed far better by your body. Maybe pop into your gp as an emergency appointment today so that you have their backing? There is plenty of evidence to say that avoiding the stomach is not only a 'kinder' way to administer mtx, but more is absorbed. Best of luck x

  • I was like this, I checked with a pharmacist about using domperidone ,Motilium you can buy over the counter ,it did help and still does when I still occasionally need it. Hate rheumatoid!😤

  • Have you tried taking the methotrexate before going to bed at night? I used to take mine once a week in the mornings. Someone suggested taking before bedtime. I find it works better for me.

  • I'm in L.A. and I don't deal with a rheumy nurse. My rheumatogist is an actual doctor. Maybe you should explore findings an actual rheumatogist doctor. Get a male doctor with a lot of experience. I've been blessed. My rheumatogist is the same age as i am. He writes everything down and doesn't overload me with meds. I asked him what am I going to do when he retires.

  • Hi Sweetpolly - I have the same question for three of my docs.. Brrrr

  • Unfortunately you have started on a really high dose so I guess your RA must be very active. it takes a while to see the benefits so I would suggest trying to persevere a bit longer, although I would agree to contact the rheumatology dept or even your gp to see if they can help with side effects . I agree with other comments about taking it at night but also drink lots and lots of water . When I first went on mtx I used to feel a bit nauseous the next day up until about lunchtime and had a slightly upset stomach. Funnily enough I found doing an exercise class made me feel better but maybe that's physiological! But now it doesn't slow me down too much and the water helps. Good luck! Definitely try and take someone to your appointment with you!

  • Thanks for all the replies. I am already taking it at night and drinking loads of water but the next day is terrible. I will ask about the folic acid as that is once a week at the moment. Will see if someone can come with me but only person who really gets it is my husband and he has huge commitment at work next week ☹️ But I will have all your comments in my head to spur me on. I still feel dreadful today, it seems worse after I eat and feeling sick kept me awake last night.

    Is it unusual to ramp up to this high dose so fast? I have done it over 4 weeks instead of the 3 they suggested but still feels a lot.

  • As mentioned earlier 25mg is s large dose and in my experience usually you start with a lower dose and increase over a number of weeks.

    I had a huge amount of horrible side effects when I started MTX - but they did settle down.

    Injections are better, plus I take folic acid (or frolic avid as I call it) six days a week - not on my MTX day.

    I also inject before bed so I can sleep through the worst immediate effects.

    MTX can take months to work - about three months for me, plus a similar time each time my dosage increased.

    In my experience it did settle and has been brilliant - I am leading a good life, my RA is pretty well controlled.

    Stick with it, don't expect immediate changes, tell your health professionals how you feel . Unfortunately there is no quick fix.

    Maybe ask about a steroid injection - often these are given to help with pain relief whilst the drugs start to take effect. Certainly helped lots with me.

    Welcome to this forum and the world of RA - it's a pain (pun intended) but doesn't have to take over our lives. Keep positive x

  • Hi I am so sorry you are having a bad time I hope you feel better soon , I had upset stomach and nausea when I was on tablets but I was lucky my Rheumy nurse is very good and changed me to injections and I feel so much better I hope you get it sorted soon x

  • I live in UK and take methotrexate as an injection. It is better because it by passes the gut. I would ask for blood tests because it is a large dose and can effect your liver

  • You should be having blood tests fortnightly anyway.

  • So sorry to hear you're suffering and you shouldn't have to. Like you I had terrible side effects from the tablets - I was on the sofa for 6 weeks as totally exhausted all the time and chronic body aches all over that I just couldn't walk. I then tried sulfasolazine but reacted terribly to this with daily migraines, nausea and loss of appetite. I've now been on methotrexate injections 20mg for around 8 weeks now. I was so reluctant to start on these fearing the worse but I can't believe the difference injections have made - no nausea no body pains just some fatigue the next day which is tolerable. I also take folic acid 5mg daily apart from the injection day and drink plenty of water. I also try to exercise daily even when I don't feel up to it as it makes me feel so much better afterwards. So please keep positive and push for injections. You have that right. Good luck.

  • I have a mixed experience. was on mtx for many years (10?) and had a lot of stomach upsets, got the runs at inconvenient times. But when I came off it I realised that it was really helping me! After a break which was really difficult, I have started on leflunomide + biologic and I've found that much milder in effects, in fact have had virtually none. I take a probiotic to settle my guts, which is helped by coming off painkillers (was taking paracetamol + ibuprofen). I think the yoghurt probiotic is actually helping a lot.

    Good luck with mtx, it did help me!

  • On winning round the difficult nurse. I moved to Scotland many years ago, from England (Oxford). I found relationships between professionals and patients was subtly different. I was worried that they might take against me because of my background and actually found that provided that I smile and am civil, I've found people very responsive and helpful. In fact a nice smile and a carefully placed comment or question does actually produce a warm response. It sometimes takes a while to get through but even with irregular appointments I have made progress. But I've tried being civil rather than confrontational.

  • You'll need to stick with your MTX for at least 6 months whether oral or injection. You should probably be taking Folic Acid 6 days a week (not on MTX day). Hydroxychloroquine (Plaquenil) helped me a lot when added to the MTX - it has made a big difference to me and wasn't added until i'd been on MTX for a year (no idea why not as a combination is common). Blood tests should be very regular when you start and then at least 4/6 weekly when things are settled a bit. Ask them what the results tell them about how you are ?

  • Bless the NHS, but sometime soon they do put patients through it! Ms Sledgehammer could do with some new training in personal skills.

    Anyway, polite persistence has worked for me in handling an over stretched and overstressed rheumy team. So setting out symptoms strongly in words that they can understand - so "sore stomach" could mean loads of things, but stabbing pain in lower left quadrant is a symptom that can be recognised. And then standing your ground about not being able to cope with these side effects, and repeating things endlessly.

    You are obviously a perfectly capable woman, so don't be browbeaten and be a perfectly capable patient. So keep asking for alternatives.

    When you go into your hospital you should find that somewhere is a PALs office (patient advice & liaison service). They are the people to contact if you are not happy with the treatment you have received, so perhaps discuss with them that you are feeling that you are not being listened to. And sometimes an early mini-complaint can miraculously change people's behaviours as they realise you are not going to be totally submissive to bad behaviour.

  • please see your regular dr and tell him about your tummy systems and ask for a CT scan or at the least an ultra sound. I was on methetraxate pills for about 8 months and took 8 pills every Sunday along with folic acid daily, I didn't really have any problems with the mtx and had blood work done frequently so she could monitor the effects. I had pain in my lower abdomen earler this year and ended up with a perforation in my lower intestine. Please have that checked out. Having a ileostomy and a poop bag is no picnic even though the bag is temporary. I will be going back in a few weeks to have it reversed and hope I have healed inside so I don't need that xtra accessary. God Bless and good luck

    After rereading I want to clarify that the mtx dosage was once a week and the folic acid daily

  • I really recommend switching to the injections. The day after your a little off but overall I felt much better. Plus it's once a week.

  • My hubby went onto mtx via injections as it does affect your stomach!!

  • If necessary print out the information about MTX and take it with you to show the nurse.

    I know I had vomiting and diarrhoea at that dose, changed to injections (as you can have a lower dose with the same effects, but the enormous mouth ulcers prompted my dentist to encourage me to ask for alternative treatment.

    Don't get mad - get even.

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