New to all this

Alan7690
Alan7690 Member Posts: 5
edited 9. Oct 2023, 19:39 in Living with arthritis

Been diagnosed with rheumatoid arthritis a few weeks ago and starting methotrexate tomorrow which I’m starting on 10mg for 2 weeks then 15mg for 2 weeks then 20mg from there, also 5mg of folic acid the other six days.

Looking for general advice on both methotrexate and what I need to do and what to look out for in general.

Alan

Comments

  • frogmorton
    frogmorton Member Posts: 30,026
    edited 10. Oct 2023, 10:47

    Hi @Alan7690

    Nice to meet you. Anything we can do to help we will just ask.

    Tips on MTX mine are as follows

    Take it on a day when you can lie-in FRIDAY has always been my day although 'they' often seem keen on Wednesdays for some reason. I find that helps a lot and take it evening so you sleep off some of the side effects if you get them. I find I need savoury and carbs the next day (oops not good!) being vegan now that is a greggs (other suppliers are available) vegan sausage roll it used to be 2 cheese and onion pasties. I know someone here used to swear by fish and chips!

    Look after yourself - dodge people with colds where you can eat as healthily as possible. Don't miss your blood tests rest when you need to....erm if i think of anything else I'll add it.

    Best of luck

    Toni x

  • Alan7690
    Alan7690 Member Posts: 5
    edited 10. Oct 2023, 11:24

    Hi @frogmorton

    Thanks for the reply and info Toni nice to meet you as well. I'm taking mine on Mondays about 8:30 PM as that's what the rheumatology nurse said and as I've retired lie-ins are no problem lol. We eat I'd say 90% healthy so that's ok and when I can weather wise try and walk 1 -2 miles daily.

    Yes please if you think of anything else add it.

    Alan x

  • jamieA
    jamieA Member Posts: 837

    Hi @Alan7690

    I find that the day (or 2 days) after my MTX I get fatigued.It was worst when I was on 20mgs MTX but it was reduced to 10mgs after I was put on biologics. I've learned to not fight it and if need be I have a lie down for a couple of hours. The rest of the time I'm fine. I'd agree with @frogmorton on keeping to regular blood tests. I think initially with me it was monthly, then two monthly and now it's every 3 months. The only issues I've had with the blood test results was I became anaemic but that was put down to a proton pump inhibitor I was taking along with an NSAID. I try to avoid crowds and in general I'm careful in what I do and where I go.

    Hope it works for you.

  • Alan7690
    Alan7690 Member Posts: 5
    edited 10. Oct 2023, 12:46

    @jamieA @frogmorton Thanks a couple of questions if you don't mind?

    Are you both also taking Folic Acid daily except on methotrexate day?

    I guess from what you say you go out hopping etc but are careful?

    Do I need to worry about anything ?

    Thanks Alan

  • jamieA
    jamieA Member Posts: 837


    https://community.versusarthritis.org/discussion/comment/713494#Comment_713494

    Hi @Alan7690

    Yes I take 5mgs of folic acid the 6 days of the week I don't take MTX. Yes I still go shopping and I use the bus and train - though not at rush hour. I still do most things but I'm just a bit more careful as I'm on a biologic as well as the 10mgs MTX. I carry hand sanitiser and I regularly wash my hands. I think if you read the leaflet on MTX and just add your own common sense then you should be fine. 20mgs MTX seems to be the border level of being classed as immunosuppressed by the likes of the Joint Committee on Vaccination and Immunisation so I think that's a bit of a pointer as to how you deal with it.

    One thing I would say is that you will more than probably need to be more assertive in dealings with the medical profession. I'd only ever really had acute medical issues previously not a chronic disease that can't easily be seen. I remember meeting someone who attends the same rheumatology clinic as I do - she has RA and I have PsA. She said she wished someone would invent a drug whereby the rheumatology staff could be injected with it and suffer from immune mediated inflammatory disease symptoms for a month to know what it feels like. I knew exactly where she was coming from.

  • frogmorton
    frogmorton Member Posts: 30,026

    Yes folic acid except MTX day. @Alan7690 and yes I live my life absolutely as normal. Like Jamie I always have a small hand sanitiser with me (did so pre-covid too) and am sensible.

    @jamieA that woman who reckoned all rheumatology staff should suffer for a month. Good idea, but.....they would need to believe it was forever to make it work properly.

    Take care both

    Toni x

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