Just been diagnosed with RA and anxious and confused about methotrexate?

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I was only told by rheumatology yesterday that I had RA, the GP kept telling me I just had a virus. When I saw consultant he just said I had it as last blood test shine the high rheumatoid markers? I had been taking 1000mg of naproxen everyday as steroid tablets did nothing to stop my flare ups! Anyway I was given a steroid injection and a prescription for methotrexate! I'm so worried about the sickness and especially the hair loss!!! Can anyone tell me about their experiences with this drug and if there are any alternatives I could discuss with my doctor? Thanks in advance 

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10 Replies

  • Posted

    Hi caraj, just wondering, as apI am still awaiting diagnosis, what were your first symptoms? I have all kinds of things going on and have for years, and despite seeing rheumatologists years ago, they did extremely little and fobbed me off with fibro and osteoarthritis in my hands and possibltpy a few other places and told me to take cocodamol and tramadol, thry do extremely little and I know ai need something more specialist, i have a few short courses of prednisolone have felt really great! But they are reluctant to prescribe regularly until my diagnosis is properly made. i am now awaiting mire detailed scans but before I have them back I am been in limbo and have been for 12 months now. My pay is about to stop and i dont know how ai am gonna pay mortgage! I amfeeling so stressed out with the dinancial probelms of not being inwork i can not sleep. I lie awake all night just trying to get to sleeo and eventually may go off about 8 or 9 in the morning for a n hour or two. I just desperately want my proper diagnosis so that I may get the right meds, so that I may return to work, so that I may save my bungalow!
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  • Posted

    You need a DMARD such as MTX to stop the progression of the disease and prevent irreversible destruction to the joints. Forget about the hair loss - you may or may not have SOME. And at the end of the day which would you rather have:  a little less hair [maybe] or be in a wheelchair?

    There are no alternatives. Anyone who says supplements or whatever will work.....forget it.

    And now you know why it's important to have a rheumatologist who understands the disease.

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  • Posted

    H gosh, this is terrible. I have been really worried about taking methotrexate and hydroxychloriquine and have had a terrible time mourning the loss of my health. I have tried to take on the comments from people on this site and I paid to see a rheumatologist to find out what was happening. I have decided to take the methotrexate because at a low dose ( up to 25mg) once a week and with folic acid and alongside 400mg hydroxychloriquine all the research in the medical journals points to this combo being the safest and most effective. I haven't started my meds and have been completely questioning all the rheumatologists and annoying everyone. But, really, there isn't an alternative. I do intend to add supplements as research at some hospitals and all clinical trials on Omega 3 are showing that it helps inflammation at 3.5g per day and there is a brilliant Norwegian oil that is pure and I think works. Also, you might want to have your iron deficiency checked - they suggested ferrous sulphate but instead bulk up with spinach and kale every day and take Floridix with vitamin b combination ( must have B6 to absorb the iron) and drink plenty of water. My health has now improved BUT it can't get rid of this damned disease and although I don't want to, I am going to have to take medication. Just get the right combination and take it and join an RA group. It will help you live again. But make sure it's not just methotrexate because it doesn't work on it's own.
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  • Posted

    Hi everyone is different taking methotrexate i myself started them start of the month and was the same as u worried how they was going to be with me...i must say i have been fine with them i take 6 tablets every monday then folic acid tablet the following day ask about that for to take also some folk feel pretty sick after taking metho but as i said i went to hospital to talk to doctor before taking the drugs i am on cos i was weary i was told i had RA just start of september not heard many reports of hair loss in folk i have been fine you have to give them a go caraj there the best drug for treating RA hope this helps and good luck
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  • Posted

    Been on MTX for 8 years and yes, I've lost a bit of hair, but not that much.

    Better to lose hair than movement, any day!

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  • Posted

    I have to add, the communicTion about RA and meds is very variable. If thee is one area the clinics etc need to improve, it is on their communication. I have noticed that at the clinics I attend, none of the staff have RA. It would be handy to see this changing.
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  • Posted

    Hi Caraj

    I have been on Methotrexate since June of this year and that is the only drug I am on except for painkillers (an NSAID) and I have had no side effects, hair loss or anything else, pain is under control and at the moment the only thing affecting my life is acid reflux which I had before but has been exacerbated by the RA. As others have said the Methotrexate affects different people in different ways.

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  • Posted

    Hi,

    I have been taking Methotrexate and Hydroxychloriquine along with folic acid since April of this year. As others have already stated, everyone is different, so any side effects may vary.

    Initially as I was building up the dosage it didn't have any side effects. Now i will feel a bit sick for a few days maybe (on and off), but it passes. To be honest I think it's more psychological as I have come to hate having to pop pills. I have found though that taking the mediciation during my meal seems to have lessened the nausea, so I am sticking with that.

    In the grand scheme of things, its definitely the lesser of the evils as far as I am concerned. The speciailist nurse at my last appointment said if the sickness is lasting too long, the methotrexate can be taken as an injection to avoid it, but I'm not keen on having weekly injections, so will stick with the tablets for now.

    I like yourself, was totally freaked out at the thought of taking the medication, but it has worked so far. So worth a try and see how you get on.

    Good Luck!

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  • Posted

    Hi Caraj,  I have been taking MTX since the beginning of last December.  I haven't had noticeable hair loss and am only now beginning to feel more nauseous.  I take it for a different disease and not RA.  It takes a few weeks before you notice any effect.  at one point, I had a bad reaction to it, so my Dermatologist told me to try taking the MTX and folic acid together.  Normally, you take the folic acid on the day after the MTX.  I have been ok since then.  I have been nauseous lately and have to discuss this with my Consultant.

    Some people have their dose by injection if the sickness gets too much and others split the dose  but, you will learn what suits you.  You will have a lot of blood tests for the first year.  Try not to worry 

    Look at this page, it is very helpful and, right at the bottom, there are links to helpful organisations.

    Good luck and, try not to worry!

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  • Posted

    I took Methotrexate for seven years, I had nausea and blackouts as the dose was raised, so went onto injections. Much better, no problems after that. Had to stop it so I could have chemotherapy, but I'm starting 20ml injections again next week and can't wait as it really helps with the symptoms. Also take 20mg Leflunomide and 30mg Prednisolone. 
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