Advice opinions please

Posted , 4 users are following.

Hi, I was diagnosed in 2014, December 2015 was put on MTX had quite bad side effects but was told it would pass.  Saw the consultant about a month ago he said no it won't so took me off.  He thought I needed some time to recover so will be seeing him next month. 

Woke on Monday with slight discomfort in my back but since Wednesday can hardly, last night the pain is really bad and is in my knees and shin.  Sitting standing lying down is painful. Is this normal? I notice before an onset of pain swelling I have not a cold but the sniffles, maybe a slight fever. Just needed to talk to someone.  The rhumetoid nurse does not work on Friday.  Thanks

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  • Posted

    Yvonne - how big a dosage did he put you on, and was it a weekly dose.

    I have been taking MTX now for years and its a really big help.

    I also hope you had monthly blood tests while you were taking it, especially for a start so they can see how your liver is coping. Only problem I have had is it not working, my ESR & CRP contiued to rise, Dr upped the dosage and bloods still going up, worked out that I was not taking up the dosage across my stomach, I now inject my 35mg MTX weekly.

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  • Posted

    Lyn I was having 15mg then reduce to 12.5mg but  only 2.5 mg folic acid.  I have bloods once a fortnight but was increased weekly as there was dip did not get a clear explanation but said they needed to keep an eye.
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    • Posted

      15mg MTX thats a high dose start with,  my rheumo started me on 5mg of MTX, and then stepped that up slowly monthly 5mg at a time, interesting that the differnet specialists like to attack the immflamation diffently.

      I am on 5mg of Folic Acid, and have always been on that doseage.

      I too have flares, if I have been upset, emotionally, or have even had a slight cold, change in weather, change in seasons.

      Certain flowers in the gardens, one neighbour has a beautfiul scented shrub, but my arthritis hates it as does my drippy nose.

      If I eat too much wheat products, i know the specailist tells me there is no link, but there is something, in the bread & bread products that causes me worse pain.

      Not taking my Fish Oil capsules, hate swallowing them, they are soo huge, but I do feel better when I take them regularly.

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  • Posted

    Sorry the methotrexate gave too many side effects. If they were monitoring you every week that s unusual. ( I had blood test every 2 weeks in early stages and now once a month) Did he see something in blood test that made him take you off methotrexate? That is what it sounds like. If have 25 mg mxt a week, with 25 mg folic acid once a week on the day after.

    i d be inclined to ask next time you see him.

    As for the increase in pain/ swelling/ feverishness  that all sounds like increase In RA activity. Maybe it s worth keeping a close diary of tender and swollen joints, fatigue and feverishness over the next few weeks as , without the methotrexate your RA is flaring up and you need him to prescribe you a different dmard . Even then,it takes up to 12 weeks for them to work, And you may need something in between to help ( like a corticosteroid jab)

    I m afraid what you describe has been ' normal ' for me at some points, but is now under control with the meds I have. But I know how scary it feels when you are suddenly worse for apparently no reason.i guess you ll contact your nurse on Monday. Maybe they can bring your appointment forward. Then sometimes it eases up for no reason too!

    Sorry you ve got a tough weekend ahead-  but I m sure they ll try another option( and there are several) to get this under control for you.


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  • Posted

    Rowbirdie and Lyn

    Thanks for your reply.  Needed to vent.

    Thanks again

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    • Posted

      Yvonne - this is exactly the place for that vent. Dont you dare apologise, there is no need.

      We have all been there and done this sooooo frustrating and soooo painful both physically and mentally

      You have a good weekend, other than the obvious


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