MTX advice and opinions please

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happy_feet
happy_feet Non-active member Posts: 93
edited 18. Jun 2010, 04:55 in Living with Arthritis archive
Hi all
Just wondered how many of you have had MTX suggested to you and declined to take it? Do the specialists hold it against you if you refuse it or do they get really pushy for you to take it? I feel Im being pushed into something and I dont know what the reaction is likely to be if I refuse to budge. I really dont want to take it but I dont want the Rheumy to hold it against me, or be annoyed or think Im ungrateful.
Really I dont want to take it Im sat here in tears.

Comments

  • jaspercat
    jaspercat Non-active member Posts: 1,238
    edited 30. Nov -0001, 00:00
    Hi, I have been on MXT for a few years now, I have asked several times to come off of it, not believing that it was working or that I wanted to take it, I have questioned it for several years, my Rheumy gets annoyed with me, she likes you to do what she says and not to have your own opinion.

    I have finally asked to go to another consultant at another hospital, we should, I believe, have a right to our own opinions, and to say no if we don't want to do something.

    Hope that you can get this sorted out love Jaspercatxx
  • happy_feet
    happy_feet Non-active member Posts: 93
    edited 30. Nov -0001, 00:00
    Thank you Jaspercat, I hope you get a decent rhuemy that will listen to you. Its our bodies and minds this has an effect on, how bad is your arthritis do you have RA?
  • lindalegs
    lindalegs Member Posts: 5,399
    edited 30. Nov -0001, 00:00
    Hi Happy Feet,

    It has to be your choice at the end of the day no Rheumy should ever push you in a direction you don't want to go.

    I will add, however, that I've been on Mtx for 2 years now and I'm so glad I take it, I feel human once again...... and, no, your Rheumy didn't tell me to say that :wink:

    Luv Legs :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • happy_feet
    happy_feet Non-active member Posts: 93
    edited 30. Nov -0001, 00:00
    Im just a coward it frightens me, not just that Im taking stuff for epilepsy and depression as well and my liver readings are already dodgy, I dont want to take MTX. Maybe Im not bad enough for it or I would be happy to take it...I dont know...
    My rheumys lovely and I dont want to antagonise him or want him to think Im doing nothing to help myself. I just dont get along with medication at all, I think I would rather suffer than take it and that would probably annoy any specialist :oops:

    Think Im just having a bad few days Im weeping all over the place, Im stressed with the ESA carry on, I know I failed it the assessment they sent me a letter saying theyre stopping my deductions as my ESA has stopped, Im just waiting for the official notice.
  • dreamdaisy
    dreamdaisy Non-active member Posts: 31,520
    edited 30. Nov -0001, 00:00
    You are not a coward. These are poisonous meds. Docs love meth because it's relatively cheap and, for some, very effective. There is always the chance that it will be the stuff for you. Get thee to a better place, give yourself time to do so, feel stronger in yourself then think about giving it a bash. Your rheumatologist is not your boss: he can suggest, and you can accept or decline. Decline now, get stronger, then discuss it with him again. Take care, keep in touch. Dreamdaisy.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • theresa4
    theresa4 Non-active member Posts: 696
    edited 30. Nov -0001, 00:00
    HI Happy feet
    first excuse any spelling mistakes or if I drift off as Im a little dopey at the mo.
    I was on MTX 3 1/2 yrs ago but because of side effects (i lost a day a week) at that time my rheumy felt it was too much to lose and I was still struggling with much pain. I came off it and bot was I wrong and rheumy too. I couldnt walk at all and had no good days at all so it was working after all. I went back on it after 6 months break but on a lower dose and Im not coming off it agian"! Its my standard base drug now whch keeps me on my feet ish at least I have 1 or 2 days a week (not every week ).
    Its up to you what you do though no one casn push you into a stage your not ready for. Just tell the rheumy your not ready for that yet. I was like that with depo steroids at first I was NOOOOOOO I dont weant it now I beg for them :lol: speaking of which I should have one this week yeah!!
    Weigh up ho wyou are feeling and difficulties you are facing then make a decision thats right for you. I havent had any major probs with MTX blood wise just makes me ill on the day I take it feeling woozy and sick I just sleep it off.

    Good luck.

    Theresa
    There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan



    Theresa xxx
  • tillytop
    tillytop Non-active member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hi Happy Feet - I know it's a big decision - and a scary one too – you are absolutely not a coward!
    You say that your rheumatologist is lovely (which is a bonus) so hopefully you can have a realistic discussion with him/her about how aggressive your arthritis is and how it is making you feel at the moment. If you are managing your arthritis at the moment, perhaps you could delay any decision for a few months and, if you get to the point where the arthritis is worse than the fear of taking the drug, the decision will be easier for you to make. And if you do decide to take the drug – you can always stop taking it if you feel it isn’t working or if you find the side-effects too much. I took it for a year and a half before I decided I had to stop it and, although the rheumatologist wasn’t keen, he understood and respected my decision.
    You really shouldn’t worry about seeming ungrateful but I understand why you do. I am seriously considering turning down the option of a third anti-tnf drug and I am having the same kind of worries about whether the rheumatologist will wash his hands of me. Same concerns, different drug!
    Please don’t sit there worrying on your own. Keep sharing with us – we’ll do our best to support you. And really good luck, whatever you decide. Thinking of you. Love Tilly xxx
  • marion1952
    marion1952 Non-active member Posts: 963
    edited 30. Nov -0001, 00:00
    Hi Happy Feet

    It is a dilemma - I was exactly the same as you about methotrexate at the beginning, but now I 'love it' - if that's possible- it has really worked for me!

    Tilly's previous message sounds like a good idea - you could always give it a try and if it doesn't agree with you you could stop it.

    Does your Rheumy know about your dodgy liver results?

    Has the Rheumy suggested other alternative 'first line' treatments, such as sulphasalazine, hydroxychloroquine ??

    Please keep posting and let us know what you decide..

    Marion
  • carola
    carola Non-active member Posts: 786
    edited 30. Nov -0001, 00:00
    Hi Happy Feet
    Hope you had a decent sleep and feeling a bit stronger today.
    Firstly, through my experience with RA so far I know that one day I feel I can take on the world and that eventually everything will be hunky dory and then the next day I feel full of despair. So just keep taking one day at a time.
    Regarding Methotrexate. I initially started with steriod injections which had nil effect. I was then put on Methotrexate in tablet form slowly building up the dosage. No positive effect yet and I feel sick and fuzzy for a day however if it works that is a small price to pay.
    I suppose you need to weigh up the effects of your Arthritis to the possible side effects of Methotrexate. Personally, I would try the Methotrexate and see. I have read about people injecting it a few times a week in small doses - perhaps you could discuss that with your Rheumy?
    Good luck Happy Feet and remember if you do try Methotrexate then take it with a positive vibe to help it along.
    Much support, Carol :lol:
  • lindalegs
    lindalegs Member Posts: 5,399
    edited 30. Nov -0001, 00:00
    Hi again HappyFeet

    What I'd like to add is that please don't feel worried about upsetting your Rheumy, I'm sure you won't. He/she shouldn't treat you any differently if you decide you don't want to take Mtx.

    Why don't you ask what other options there are first?

    I can understand you being scared, afterall its the unknown, and is also quite a toxic drug. I think we all worried about taking it initially.

    Tell your Rheumy or GP your worries don't keep it from them - they're there to help you at the end of the day.

    Luv Legs :)
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • abbie41
    abbie41 Non-active member Posts: 55
    edited 30. Nov -0001, 00:00
    I have a big prescription for methotrexate and sulfalazine I have to collect this coming Monday when I see my Rheumo nurse for the first time. Im really apprehensive about the side effects and Im glad to see positive comments on here. I will be giving it a go after discussing it properly with the nurse. I can say though, that I am proper stressed out over it all. :cry:

    Did you decide to take it??
  • carola
    carola Non-active member Posts: 786
    edited 30. Nov -0001, 00:00
    Hi HappyFeet

    Just thought I'd quickly ask how you are feeling today as I know a few days ago you weren't feeling too good?

    I'm in a fighting spirited mood today so send your woes and pains to ME and I'll punch them into a pulp for you :lol::lol:

    Hugs and positivity
    Carol x
  • annajayne
    annajayne Non-active member Posts: 28
    edited 30. Nov -0001, 00:00
    abbie41 wrote:
    I have a big prescription for methotrexate and sulfalazine I have to collect this coming Monday when I see my Rheumo nurse for the first time. Im really apprehensive about the side effects and Im glad to see positive comments on here. I will be giving it a go after discussing it properly with the nurse. I can say though, that I am proper stressed out over it all. :cry:

    Did you decide to take it??

    IVe been on mtx for a few years and as from monday been put on sulfalazine too...no probs with the mtx but you do have to give it time to get into ur system......had a headache every day since being on the other..but wether this is coincidence or not I just dont know

    anna
  • jaspercat
    jaspercat Non-active member Posts: 1,238
    edited 30. Nov -0001, 00:00
    happy_feet wrote:
    Thank you Jaspercat, I hope you get a decent rhuemy that will listen to you. Its our bodies and minds this has an effect on, how bad is your arthritis do you have RA?

    I have RA which is not too good at the moment, and have entered a flare up with lots of pain love Jaspercatxx
  • tillytop
    tillytop Non-active member Posts: 3,460
    edited 30. Nov -0001, 00:00
    IVe been on mtx for a few years and as from monday been put on sulfalazine too...no probs with the mtx but you do have to give it time to get into ur system......had a headache every day since being on the other..but wether this is coincidence or not I just dont know

    anna[/quote]

    Hi Anna, just saw your comment about Sulfa and headaches. I had shocking headaches and nausea for the first few weeks of Sulfa but, once it got into my system I had no further probs. So it might be that you will find that the headaches disappear in due course. Hope so! Love Tilly x
  • tillytop
    tillytop Non-active member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hi Jaspercat, have posted for you elsewhere too, but just to say sorry you are struggling and I am thinking of you. Love Tilly x
  • kevlar
    kevlar Non-active member Posts: 41
    edited 30. Nov -0001, 00:00
    Hi Happy feet,
    lets see an update, let us know how you got on, what you decided to do in the end.

    For my tupence worth, I've been on MTX for only 5 weeks (the 5th dose is due this eve) but I've noticed no effects from it at all so far, good or bad.

    Like you I was very reluctant to take it at first, on the point of refusing it, when I put this to my GP he changed my mind. He told me it works wonders for most people with no serious side effects. So I thought I'll give it a go and if it's horrible I can always stop taking it at any time.

    As for upsetting your Rhuemy nurse or whoever, don't worry yourself about that. They are professionals and (generally speaking) know what they are talking about and are worth listening to.

    But in the end it has got to be your decision as what you take and what you don't take.

    Hope it works out for you, best of luck, Kevin
  • annajayne
    annajayne Non-active member Posts: 28
    edited 30. Nov -0001, 00:00
    Thought maybe it was just coincidence but have now had headache every day for last two weeks since been put on new med so must be connected!!! yep fingers crossed will go away with time
    anna x

    [/quote]

    Hi Anna, just saw your comment about Sulfa and headaches. I had shocking headaches and nausea for the first few weeks of Sulfa but, once it got into my system I had no further probs. So it might be that you will find that the headaches disappear in due course. Hope so! Love Tilly x[/quote]

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