Methotrexate Advice Needed

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I have just been diagnosed with RA.  My rheumatologist has told me that although it's in the early stages, I have a particularly aggressive form of the disease.   I certainly feel dreadfully ill and have had a steroid injection in readiness for starting on the meds.  I am due to start taking Methotrexate tablets in one week's time, initially starting with a weekly dose of 10mg for first four weeks, then increasing to 15mg and so on.  I've been told to take my weekly dose in one go, on a set day and for the other 6 days, I will be taking folic acid.  I have been reading up on this drug and am somewhat apprehensive about the side effects I may experience - I understand that it's also used in the treatment of cancer.  I realise that side effects vary greatly from person to person but I would be grateful to learn of anyone else's experience with methotrexate and would welcome any words of advice you may have.  Thank you.

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  • Posted

    Hi,  I have taken Methotrexate for about 3 years now.  The only side affects I have are upset stomach and fatigue.  I had a little problem with my hair thinning on top near my part but that is better now that I take Folic Acid.  I take 8 Methotrexate pills every Wednesday.  I also take plaquenil.  Methotrexate is taken for cancer but in much, much larger doses so try not to be scared about it. When I first started MTX I got really bad back pain every week I took it.   Then I discovered that if I drink lots and lots of water on the day of and day after I take it I don't get the back pain.  I wish you the best of luck n managing your RA.

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  • Posted

    I took Methotrexate for about 4 years. It controlled my symptoms with Humira but I had to reduce my dose due to low neutrophills. Consequently, my symptoms were less well controlled. I've had a range of treatments like many people on this forum but I had to stop Methotrexate altogether at the beginning of this year because of lung fibrosis. I understand it works for many but this is my experience. You should be well monitored as I was but I did find the lung problem was outside my GPs experience . I knew I had a problem and managed to get referred to a respiratory consultant. It is now resolving. I hope you find something to suit you, be it methotrexate or something else. Good luck! Carol (UK)

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  • Posted

    Hi missfifi, I have been on methotrexate for over two years, 20mg dose every Monday. I take folic acid, two tablets the day after Methotrexate and one every other day except the day of MTX. I don't have any problems, except a little thinning hair. It does however cause a few problems with my liver. I have blood tests every month and my Rheumatologist keeps a good eye on the results and rings me to lower the dose for a while until it settles down. I also ask that all blood tests are sent to me too and I do a spreadsheet with the results so I can see myself how I'm tracking every month. This has proved invaluable in the past where some tests have not been done and I feel more in control. I have also been on a Biologic for over a year and recently changed to Actemra weekly injections and I feel better than I've done in years!

    These drugs do help and I know there are others who have worse side effects but injections of MTX seems to help with them.

    good luck in the future, the earlier you find the best drug regime to fight this the better you will feel.

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  • Posted

    I was so scared to start methotrexate but im on week 7 and so far been fine. I am wiped out day after taking it but that's it. Everyone is different which is advice I was given from this forum and it's true. My pain level has decreased already and certainly have less swelling so I would say give it a go I take it with my evening meal to minimise side effects.

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  • Posted

    Thank you all for taking the time to post your replies.  It certainly helps to read about your experiences.  Do you also suffer with fatigue as a result of your RA?  The type of thing I'm taking about is a feeling of being "wiped out".  It's more or less constant and the slightest activity wears me out.  It seems that no matter how much sleep/rest I get, it doesn't improve.  Do any of you experience this and how do you deal with it?  To be honest, I am finding this the worst aspect of my condition and any advice would be greatly appreciated.  Thank you.

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    • Posted

      Wiped out is a good way to describe it. It was one of the first symptoms I had. I felt that I had weights on my arms and legs, I couldn't lift my arms to dry my hair and I was convinced the tyres were down or power steering not working on my car, only to find later the same day they would miraculously repair themselves. I seriously thought I was going mad. Along with that was this fog in my brain. I would find myself staring into space, reading something over and over because I couldn't take it in and forgetting names and what I was doing. I found myself having to sit and relax frequently. I thought I was just becoming lazy. I eventually gave up work as it wasn't fair on my employers. I've just been given a new biologic DMARD and for the first time in four years the fog has lifted. I didn't realise until it got a little better how bad it's been.

      they may have to try different meds especially biologics to find which suits you. I gather different ones target a different part of the immune system so when they match which one helps you it should feel better. Good luck.

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    • Posted

      Thank you Mary.  It's good to hear someone else's experience.  I have found that the exhaustion is by far the hardest thing to deal with.  At least with pain, it's under control to a large extent but the unrelenting fatigue is something else - I just don't feel I have on iota of energy to fight it!  I should be starting the Methoxotrate next week and, although I'm apprehensive about the side effects, I just want to get on with it.  Thanks again your response.

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  • Posted

    I have had RA for 15 years now. I take mtx, plaquenil, and leucovorin (a digested form of folic acid). The mtx intake is 10 mg every Thursday and the leucovorin is one pill on Friday. I have had no side-affects from mtx so far. In my first few years, fatigue was an issue........felt as though my body had the flu. But as we adjusted meds, the fatigue has greatly diminished. My RA doc tells me that the fatigue is caused by general inflammation in the body. So if the inflammation is kept down there is less fatigue.

    One side note, but related: I have been seeing a periodontist for three years now and he cleared up a gum infection that suddenly started due to a cracked molar. Now that my mouth is in good shape I have almost no symptoms of RA. My rheumatologist told me that there is absolutely a correlation between oral health and RA (along with heart disease!). Just thought I would mention that.

    Best wishes.

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