Methotrexate

Jem26
Jem26 Member Posts: 28
in Living with arthritis

Hi All

I an new to this forum lived with Psoriasis for over 40 years and Psoriatic arthritis for over 20.

Had been on sulphazaline no longer working for me, recently had a horrendous flare specialist has decided to move me to Methotrexate to try and get it under control as more joints affected.

I have heard so much negatively re this drug as so toxic hair loss mouth ulcers weight gain skin peeling and life threatening issues, so giving me sleepless nights and not started on it yet. So just asking if anyone can help

With advice who's on it.

Thank you for the help much appreciated 😊

Comments

  • MarkInSussex
    MarkInSussex Member Posts: 31

    Been on Methotrexate for a while, never had any problems with it, well, saying that, one side effect i used to get was unbelievable flatulence a few hours after i took it, but thats calmed right down now and i have no side effects at all.

  • CarylW
    CarylW Member Posts: 274

    Hello @Jem26

    I am glad you have found this forum, and I hope you will find you get plenty of help and support from our members.

    I understand you have had Psoriasis and Psoriatic Arthritis for many years, and your GP wants to try Methotrexate to get it under control. I am posting some links below which will hopefully give you some information:

    https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/


    https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

    Do keep in touch and let us know how you are getting on!

    Best wishes

    Caryl

    Need more help? Call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Jem26
    Jem26 Member Posts: 28

    Thank you for your help and advice much appreciated 😊

  • Nfk_gal0617
    Nfk_gal0617 Member Posts: 39

    Hi Jem26. I wonder where you got your negative info from? From my understanding this is a strong drug and not all people get on with it. However I am aware of two people who have taken it with no trouble. One for ages, since a teenager. The other a elderly lady who was very nervous at first but once she started takeing it she said she had now got her life back and very glad she she was encouraged to give it a try. She lives on her own and is still independant.

    Hope this helps, Nfk gal

  • Jem26
    Jem26 Member Posts: 28

    Hi Thank you for the update I have read up on the drug and was informed by a patient who was on the drug who had terrible side effects when taking it so was asking for a broader opinion.

  • Nfk_gal0617
    Nfk_gal0617 Member Posts: 39

    Hi Jem26. I wonder where you got your negative info from? From my understanding this is a strong drug and not all people get on with it. However I am aware of two people who have taken it with no trouble. One for ages, since a teenager. The other a elderly lady who was very nervous at first but once she started takeing it she said she had now got her life back and very glad she she was encouraged to give it a try. She lives on her own and is still independant.

    Hope this helps, Nfk gal

  • Nfk_gal0617
    Nfk_gal0617 Member Posts: 39

    Hi Jem, Its Nfk gal again. I was wondering if the patient you spoke to was on the lower dose given for arthritis as opposed to the much higher dose given as chemo for cancer. I too am quiet nervous as Methotexate is the next drug on the list if Salfasalazine (Im a rubbish speller) does not work for me. I'm do to start Sal if basline bloods ok. I'm aware of side effects as my daughter could not tolorate Methertexate even in small doses which was part of her cancer treatment aged 10. That was 25 years ago and her treatment was sucesseful without Methotraxate in the mix. All the other children on the same protocol managed it fine, so any reaction is very individual. That is why I assume we need regular blood tests to see how we re-act as an individual. Very difficult and nerve -racking all the same. Hope your flare subsides soon, Nfk gal

  • Arthuritis
    Arthuritis Member Posts: 452

    @Jem26 Hi Jem, I am on MTX (methotrexate) as are many here, max dose of 25mg weekly with 200HCQ daily. @stickywicket is on it too. It takes about 3 months to build up to its full efficacy. The biggest drawback was the horrible nausea lasting a day when after taking it, but only when my dosage had been increased to above 20mg. Prior to that this didn’t happen, so the effect on you may vary according to dose. Also I have posted here somewhere the long list of drug interactions with MTX that you need to be aware of & check.

    Hopefully with patience MTX will work for you.

  • Jem26
    Jem26 Member Posts: 28

    Thank you just a bit overwhelmed at the moment was happy on sulphazaline as worked so well no side effects unfortunately it's just not working anymore bloods are so high and more joints affected. Consultant ar RUH has been fab as my local hospital are not specialists in Psoriatic Arthritis. And I just want to feel more normal. I am so grateful for everyone comments and help much appreciated 😊

  • Woofy
    Woofy Member Posts: 360
    https://community.versusarthritis.org/discussion/comment/705809#Comment_705809

    Hi Jem26.

    I am finding your post so interesting. Dr from RUH is calling me tomorrow re my meds. I am on Sulphsalazine too, with horrible flare ups. I think I will be given Mex next, as Salph isn’t cutting it. These meds take a long time to kick in I know. I am nervous too ,so you aren’t alone. I want some quality of life back, so I will give it a go I think. I’ll let you know what happens tomorrow.

  • Jem26
    Jem26 Member Posts: 28

    Hope your Telephone call goes well and you manage to get your pain and flare under control,

    I was told I had to have sulphazaline then Methotrexate before they can try next medication so will see how we both go. Take care 🙂

  • Jem26
    Jem26 Member Posts: 28


  • AuntyMaz2020
    AuntyMaz2020 Member Posts: 3

    Hi Jem26

    I am now on Methotrexate (20mg weekly injection) - I couldn’t tolerate the Sulfasalazine (had dreadful side effects which didn’t subside despite giving it at least 6 months as I was worried too about changing to Methotrexate.

    I was apprehensive at first but it has been a game changer for me - I didn’t get on well with the tablets (nausea mainly & tiredness next day) - I find the injection so much easier. No nausea but sometimes affects my bowels but nothing too awful. I saw an improvement with my arthritis very quickly. I can definitely make more of a fist with my hands. Have one very problematic finger currently but likely to be my osteoarthritis rather than the PsA.

    I get my bloods monitored regularly & take folic acid.

    I hope you get on with it -don’t be too scared you may find it better than you think. Best of luck

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,239

    Hello @AuntyMaz2020 and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

    It looks like you have now found a medication which works for you which is great news. I've put a link in below to info from our website on methotrexate as it might be worth a read through. I've also put a link in to hands OA which may be of use.

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

    and

    https://www.versusarthritis.org/research/our-current-research/our-current-research-projects/osteoarthritis-understanding-what-causes-common-hand-conditions/

    Please keep posting and let us know how you are getting on.

    With best wishes

    Peter (moderator)

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • Jem26
    Jem26 Member Posts: 28
    https://community.versusarthritis.org/discussion/comment/706612#Comment_706612


  • Jem26
    Jem26 Member Posts: 28

    Hi All just a quick update

    I have started the Methotrexate so far just a very bad head sore eyes no nauseau but a metallic taste in my mouth which is making my food taste diffently.

    Will update again with my progression thank you to you all for your help and advice much appreciated 😊x

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