Been in Methotrexate for 3 1/2 months
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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.
1 like, 21 replies
EileenH stuart92943
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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.
stuart92943 EileenH
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EileenH stuart92943
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It's wonderful stuff! It gave me my life back - but it is the only thing that works for polymyalgia rheumatica,
EileenH
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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.
stuart92943 EileenH
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vanessa74034 stuart92943
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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
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 .
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
stuart92943 vanessa74034
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Smaslow stuart92943
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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 🤞
stuart92943 Smaslow
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emmaholder stuart92943
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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
stuart92943 emmaholder
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beverley_18828 stuart92943
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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.
stuart92943 beverley_18828
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Smaslow beverley_18828
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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 🙏
diane77471 stuart92943
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Hi Stuart, Methatrexate didn't help me at all but when Humira was added, I had relief within 1 month. Goodluck.
stuart92943 diane77471
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Smaslow diane77471
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Smaslow diane77471
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diane77471 Smaslow
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