Been in Methotrexate for 3 1/2 months

Posted , 7 users are following.

Hi new here was diagnosed with RA about a year ago tried salfalazine but got sickness with it, have been on Methotrexate and Hydroxychloroquine and folic acid the Meths are injections for 3 1/2 months but still got lots of swelling and pain. Had several courses of steroids which do help but having to take alendronic acid now as developed osteopenia. Rheumatologist has said she doesn’t think the Methotrexate is going to work so I have to go back in July to discuss biologics at this point don’t really know much about them I am in the UK anybody get any suggestions if I should aim for a certain one or is it just pot luck which ones work.

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  • Posted

    How bad is the osteopenia? If your t-score is in the normal range it is recommended NOT to take alendronic acid immediately but calcium and vit D supplements and improve exercise and diet. I've been on pred for nearly nine years for something else, my t-scores at the start were about -1.3 and in that time have only gone doen to -1.5 at worst. No alendronic acid, just calcium and vit D. The AA itself can cause joint and muscle pain.

    • Posted

      Hi not sure what the scores were doc put me on alendronic and calcium had a lot of weight loss and muscle wastage due to pred but at the moment it’s the only thing giving any relief.
    • Posted

      PS - I had awful muscle wastage with methylprednisolone (Medrol) but nothing with prednisolone or prednisone. Perhaps they could try one of the others - everyone reacts SO differently and it seems to be something a lot of doctors aren't aware of.

  • Posted

    Hi Stuart, I am on methotrexate (11 years now). It started failing me about 4 years ago and was suggested I go on a trial for toximilimab as it is a very expensive drug. It was an infusion every 4 weeks, I felt the effect in the second week. I literally lay in bed one night thinking good grief, no pain smile

    the trial was first 6 months full dose methotrexate then 18 months either full or half dose methotrexate or a placebo. We weren't told which one we were given. Both my rheumatologist and myself think I had the placebo as I started failing again sad

    Anyway trial finished early as enough results were gathered so I just continued with infusion every 4 weeks but not being monitored as rigorously. About a year ago I was asked to do weekly self injections as apparently it is cheaper, I wasn't the only one asked, quite a few were. I am one of the few were methotrexate and toximilimab do not work on me on their own I need both together but apparently the bio's work effectively on their own for many people. I know there is another one called infliximab as some in my group were on that, not sure if It is rheumatologist preference 

    • Posted

      Thanks for info think she is thinking of Methotrexate along with a Biologic, not seeing her now until July as I believe they have to give non biological drugs 6 months before they can try you on a biologic.
  • Posted

    Hi stuart92943

    Just added Humira a week ago to the mtxthat I am already taking . Haven’t had any noticeable improvement as of yet. For what I heard I have a good few more weeks b4 I will notice any improvement, so I am keeping my finger crossed 🤞 

    • Posted

      Hi would be interested to know how you get on with it good luck.
  • Posted

    Hi

    I take Humira the biological drug. I am also on hydroxychloroquine and leflunomide. There was a massive difference to pain etc once I started on the Humira. I would definitely say to try it if you are offered it. It has really helped xx

  • Posted

    Hi Stuart, I think it is pot luck with the biologics, so don't be put off if one doesn't work, I've had four different ones in the past, two by infusion and two by injection, the only one that worked for me was Embrel an I noticed the difference within two hours of having the first injection, I was also prescribed methotrexate alongside it but developed a lung disease, they said they didn't think it was caused by the methotrexate but stopped it which seemed a bit suspicious to me, then about a year ago they changed the Embrel to Benepali which they said was exactly the same drug just a cheaper form, I've had a lot of side affects from this and it's not working the same as the Embrel, after six months of telling them this they are now allowing me to return to the Embrel, fingers crossed it still works, good luck with yours, I hope you find one that works for you.

    • Posted

      Thanks a lot here’s hoping as Methotrexate isn’t working on its own just a shame that I have to wait 6 months but have got steroids to tied me over in the meantime.
    • Posted

      Hi Beverly18828

      Don’t you just cringe at  these drs that won’t listen to you when u tell them something isn’t working.  I mean come on  your the one in pain , you know if something isn’t right , yet they put you through all this pain and agony only to go back to what you asked for in the first place. I hope you get back to feeling better again soon 🙏

  • Posted

    Hi Stuart, Methatrexate didn't help me at all but when Humira was added, I had relief within 1 month. Goodluck.

    • Posted

      Thanks for your reply I am hopeful are you in the UK also did they give you a choice or did they think Humira was the best for you.
    • Posted

      I’ve been on mtx for about 3 months now  and just gave myself my first injection of Humira last Wednesday.  I sure hope I am as lucky as you to see results in a month.Diane ,  What did you notice first that it was working? Pain relief?, less fatigue?, more energy ?  
    • Posted

      I’ve been on mtx for about 3 months now  and just gave myself my first injection of Humira last Wednesday.  I sure hope I am as lucky as you to see results in a month.Diane ,  What did you notice first that it was working? Pain relief?, less fatigue?, more energy ?  
    • Posted

      Dear Smaslow, I was only on mTX for 2 mo with no relief. Pain and fatigue were crippling. I emailed my RA doc 3 to 4 x week to say I felt like a mac truck ran me over. And I had such anxiety and depression with it. Lost alot of muscle too in 1 mo. Can you believe it? Anyway, she put me on humira and within 3 to 4 weeks I was so much better. I am so grateful for this drug. And I continue to take 10 mg mtx. Good luck. Hope you find relief soon. Diane

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