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How to cope with methotrexate side effects

Sophie98Sophie98 Posts: 21
edited 8. Apr 2020, 20:59 in Living with arthritis
Hi, so I ended up with an emergency rheumatology appointment a few days ago. I was on sulfazalasine, abatacept and leflunomide. However, they've stopped the leflunomide because it has made my blood pressure high and even with amlodopine and lisinopril it is still higher than it should be so they said that it's not safe to continue with it. I've been on sulfazalasine for a few months now and I've only had 3 doses of my abatacept so far so it's early days for that. They've advised that I should try methotrexate again in replacement of the leflunomide. However, I was on methotrexate years ago when I was 10-13 years old and the nausea was awful and my parents had to fight with me every week because I didn't want to take it. It sounds so stupid but I'm so anxious about the thought of it like when they mentioned it I wanted to cry. At first I was adamant that I wanted to wait and see if the abatacept and sulfazalasine would work alone but now I'm considering giving it a go. I've been flaring for over a year no matter how many painkillers, steroids or anti-inflammatories I take it isn't getting better. Does anyone have any tips on how to ease the nausea and cope with taking the methotrexate? I just want this to be over and get my life back. Thank you x
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Comments

  • frogmortonfrogmorton Posts: 25,825 ✭✭✭

    Hi Sophie

    Let's hope that because you are older now your body is better able to cope.

    I suggest - you take it in the evening so you sleep off some of the effects. Then the following day you rest as MUCH as possible.

    Some people recommend carbs...chips, pasties that sort of thing? Eating little and often not getting over hungry. Fizzy drinks help me with nausea too - slightly flat fizzy drinks. I never drink them as a rule but with nausea for me they help.

    Above all plenty of rest if you can and when you are awake distraction which I'm sure you're good at anyway.

    Take care and I think you are very brave giving it another go ((()))

    Love

    Toni xxx
  • Hi Sophie

    I used to get nausea too, I found ginger tea helped and as Toni suggested, taking them in the evening so you can sleep some of the symptoms off. I know others found mint tea useful. Keeping fingers crossed for you, let us know how you get on

    Grace111

  • Thank you! I promised myself that I would never take it again so it's such a hard decision to think about giving it another go. But I'm no closer to remission than I was 8 months ago so I might just have to try it again and get on with it. Thanks again for your advice.
  • Hi Sophie,

    Sorry if I've asked this before, but are you on course to take tablets or to self-inject methotrexate?

    I ask because I had trouble with nausea on the tablets, but the injections are fine. My rheumatologist didn't make the change due to nausea, though, as I dealt with it by eating a big roast dinner before taking the tablets. I drank a lot too (water, that is!). I had to come off the tablets because I'd started to feel as though my eyebrows were sliding down my face. They weren't (I checked), but he seemed very concerned by it. Anyway, I hope this is of some use to you.

    Best wishes,

    Phee

    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Hi Phee,
    When I was younger it was actually the injections that kick started the nausea and made me physically sick when I was on the higher dose. Then when I was eventually reduced to a lower dose of the tablets I felt really sick then too but I think it was mostly in my head at that point. My dad is on the tablet form now and I can't even bear picking the box up let alone touching them or swallowing them. Also the yellow colour of the liquid in the syringe makes me feel sick. I think the anxiety is because I scared myself so much about it as a child, I can even still remember the taste of the tablets and I would get the same taste when I'd had an injection. I honestly feel so anxious about it because of what I remember from taking it as a kid even though I know logically that it probably isn't as bad as what I used to think it was. They said that I'd be started on the lower dose tablet form to see how it goes before building it up. Thank you for your advice x
  • frogmortonfrogmorton Posts: 25,825 ✭✭✭

    Hi Sophie

    When my daughter was on chemo at 16 she used to be sick 'ready' for certain chemos so I understand too well the effect that 'memory' can have. (It wasn't the MTX even though that did make her rather sick).  She was on chemo for 2.5 years and I remember looking into causes for nausea. There were 3 reasons, but I can't remember them all Macmillan gave me the information at the time.

    One is definitely 'in your head' (not being disrespectful of course) so could it be possible to ask the GP for a course of something???? CBT???  To get it out of your head prior to restarting.

    Keep in touch with us let us know how you get on.

    Love

    Toni xxx
  • Hi Sophie,

    You're welcome for the advice; sorry, I didn't realise it was both the tablets and the injection that made you feel sick, and still do, clearly. I don't know much about these things, but it almost sounds as though you've developed a phobia.

    I think Toni's suggestion re. CBT is worth mentioning to your GP, or perhaps you might benefit from anti-nausea medication, prescribed as a placebo? Or something for the anxiety, even? Well, I don't know much about that either, but I do think it would be a good idea to talk things through with a medical expert 👍️

    Best wishes,

    Phee

    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • there's a lot of great advice here, but as I also suffered with nausea especially from the methotrexate injections I'd add the following practical tips that helped me:

    • a friend who had had chemotherapy recommended the anti motion sickness wrist bands. they are drug free not awfully expensive and widely available. If you can't get out at the moment they should be on boots online
    • as well as the ginger tea, when the nausea was nagging all the time and a sick feeling even when not being sick I found little pieces of crystallised ginger helped. Chew them like a sweet and as well as helping settle your stomach, they have such a strong taste they distract your mind from the nausea. (holland and barrett or health/whole food shop is your best bet)

    On the mental dread aspect: when I was moved to a new injection treatment because I couldn't cope with the nausea any longer, I was almost as distressed and worried about how it would feel. What I found was I changed the circumstances of my injection, where I did it, where I washed my hands before, the swab I used anything and everything to make it different. The smell of the antiseptic wipe almost brought on the nausea because I associated it with the methotrexate - I changed the brand and got a different scent. I know that sounds silly but do try anything that changes the association in your mind - play a favourite song that you can sing along with as you do it!

    You're very brave to go ahead with this, all the very best.

    Louise

  • Thank you everyone! I might speak to my gp and see if there is anything they can do to make feel less nervous about it. I definitely do want to give it a go because I know it could really help me I just need to figure out how to not over think it and how to not make myself feel sick at the thought of it x
  • frogmortonfrogmorton Posts: 25,825 ✭✭✭

    Sophie do let us know how you get on because I would love to hear back on MTX and coping well ((()))

    Love

    Toni xxx
  • Ask to be given the epi pen injections - I too suffered from nausea and dreaded taking the tablets, but since being on injections the nausea has disappeared (and the injections don't hurt at all!).

  • trepolpentrepolpen Posts: 497

    FOLIC ACID , that is your answer , they gave me 5mg six times a week to sort the problems with raised liver inflammation ( ALT ) they had to keep stopping MTX & after upping my results was back to normal & hair thickened over time , just some doctors dont like giving much folic acid , ask them ,

    the injections would be better than the tablets & being pens are very easy like your biologic

  • Hi,

    your dr could prescribe anti-sickness tablets, they will control the nausea.

    take care

  • Adi65Adi65 Posts: 6

    hi I also suffer with nausea and inject Methotrexate I find sipping lucozade pink lemonade seems to help might be worth a try .fingers crossed

  • I dread taking my six Methotrexate tablets every Friday but I take them before bedtime and I find that if I have something lightly spicy for dinner beforehand and them take them with a glass lemonade I have no side effects such as nausea and stomach rumblings. However, last Friday I just had a sandwich for tea (had nothing spicy in the house) and the following day (Saturday) I was physically sick and this was how it was when I was first prescribed them four years ago. This was the first time in ages that I had a side effect of taking this medication. My mindset is that Methotrexate is helping my RA but I do hate taking them and I know that I will probably be on them for the rest of my life.

    Take care and stay safe everyone.

    🐶

  • Thank you! I have an appointment with my consultant in July to discuss medications because this biologic has also failed and I'll definitely think about giving methotrexate a go
  • I had all sorts of problems with the oral option, I told my consultant who tried me on a Metoject Pen injection, which I self administer once a week, no more problems.

  • I've only just started methatrexate for my RA, but I was prescribed folic acid which I take 2 days before, so far no problems.

  • BrynmorBrynmor Posts: 744 admin

    Hi @Panelbeater1 and welcome to the Online Community.

    Being prescribed folic acid whilst taking methotrexate is to help you cope with any side effects. There's more information here about taking methotrexate:

    Do tell us more about your experience with arthritis, let us know how you are getting on or call in for a chat.

    All best wishes

    Brynmor


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