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Methotrexate concerns

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Guest
Guest

Methotrexate is a potent drug with many side effects. Even those on low doses normally report adverse reactions, often very unpleasant and adding to their other health problems rather than clearing them up.

I was prescribed it, and stuck it out for a year before deciding that it was doing me more harm than good. It did little to reduce the symptoms of my psoriatic arthritis, but made me feel dull and depressed, gave me digestive problems and diarrhoea, made my hair fall out and I had constant flu-like problems. All of this cleared up when i stopped taking it agaist the advice of doctors.

These doctors looked on me as a stupid woman for listening to my body and not to their text-book 'wisdom'. Unfortunately they seem have a lot less respect for me now.

I understand that not too long ago Methotrexate was a drug of 'last resort' if less powerful drugs did not work. Now it is described as the 'gold standard' and given as an early precaution in case arthritis progresses to cause damage to joints. This seems like giving morphine for a headache in case it progresses to migraine -execept that morphine has fewer side effects.

To those of you taking the drug, or under pressure to do so. Keep a diary of benefits/side effects and consider whether Methotrexate is helping or hindering you.

14 likes, 74 replies

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  • Guest
    Guest

    Posted

    Susan

    I was so pleased to see your note! This drug also made me feel awful, and my doctors tried to talk me out of giving it up. I thought I was the only one who had had these problems, and the doctors didn't want to know about side effects my hair fell out, I caught every germ going, I had ulcers in my mouth and was washed out and foggy all the time. My arthritis got better when I first took it, but got worse again after a few months. I am back on a higher dose of flamrase now and feeling much better in myself for giving methotrexate up.

    • peter05301
      peter05301 Guest

      Posted

      Hi

      Took my first dose yesterday. It will be my last. Never felt so ill. Within half an hour fell into a drug induced awful sleep for 3 hours and still feeling awful now. Still got to get home from fleet to Huntingdon feeling like I've got flu and then on to my girlfriends fathers funeral. Good job I took the tablet yesterday or I wouldn't have even got to the funeral. I'll contact my specialist rheumatologist nurse and ask her to see the consultant and I'll ask to be put on azathioprine coz I know that works for me and no bad side effects. This feel like morphine cold turkey. Which having done after being prescribed it and after 4-5 months I felt like a brain dead zombie, I know how it feels.

      This feels more like bad poisoning than medicine.

    • peter05301
      peter05301

      Posted

      I've now been told never to take methotrexate again. I've had to have lft fbc u&me blood test to find out if it's caused any damage. This was only on Friday so I won't get the results from that yet. Was also tested for TPMT to see if I'm still ok for azathioprine. Had a flare at the weekend but it seems to have cleared up by itself. Perhaps since I've been off pred for a year and on hydrocortisone, my adrenals have started to work I've been getting pain in my kidney area so am wondering if my adrenals are starting up again. Normally a flare would last 2 weeks and I'd need to be on morphine to stop the pain. So methotrexate not for me I'm glad to say. I had no side effects from azathioprine whatsoever. The only problem I had with that was I had to start on a low dose then up to the full dose, coz the first time, they put me on the full dose straight away and it made me nauseous and gave me a terrible headache. Good luck. I think methotrexate is like taking a sledgehammer to crack a nut but the docs seem to like it.
  • Guest
    Guest

    Posted

    Im on 20mg and it made me lots better though I feel after a year that the effect is tailing off ever so slightly!

    I can still do my work(Firefighter) and go to the gym/play sports, the only effect I get is sore ankles.

  • Guest
    Guest

    Posted

    Blimey! A firefighter with arthritis! Mick, I would like to know which sort of Arhritis you have, the reason you were prescribed Methotrexate, and how it compares to what you were taking before. I am now on 15mg. I like to visit the gym to keep fit, but I find it saps my energy, and exercise is a real struggle. I'm 39. Maybe you are younger?
  • Guest
    Guest

    Posted

    I was diagnosed with Psoriatic Arthirits in April this year (2008). I have had the symptoms for 2 years, but it has took doctors and rhuematologists this long to make a diagnosis. My rhuematologist has put me on methotrexate as a long-term solution for my Psoriasis and Arthritis. At the moment I am taking 12.5mg but as form next week on I will be taking 15mg/week. I find it scary that methotrexate could bring on early menopause. I am only 28years old, in a steady relationship with plans to get married and have children within the next 3-4 years. It is interesting that you say the treatment made you feel dull and depressed. I am struggling to come to terms with my condition and the treatment, and I feel down in the dumps all the time and very angry for very little or no reason. I am also very oversensitive and hang on to any hurful comments people make about my condition. I will be seeing my Rheumatologist in a few weeks time, do you think it would be a good idea to ask him about alternative treatments? Sometimes I feel I could scream! Is this normal???
    • vicky2259
      vicky2259 Guest

      Posted

      Sounds like you should come off your medication and ask for something that makes you feel better psychologically. Also, are you taking supplements to support your brain function? I find Fizzling Minerals has helped me significantly. It's not cheap but as soon as I started taking a lozenge, it made a difference and made me feel alert and able to cope. I must just add that taking them at night gave me an acidic stomach, keeping me awake at night so just take with food first thing in the morning.
    • dawn1206
      dawn1206 Guest

      Posted

      I feel the same way like I could scream too! Things I use to handle with ease have become so much harder. I worry about depression creeping in because I feel like I'm a happy go lucky person and now I just don't feel my self.

    • lauri1700
      lauri1700 vicky2259

      Posted

      I would like to know what fizzling minerals are too...sound interesting. lol
  • Guest
    Guest

    Posted

    Holly08

    I am still very glad that I came off of the Methotrexate. I still feel better than I did when I was taking it. I was warned that my joints might deteriorate without it, and I was very worried, but a recent set of X-rays showed no damage.

    I wish I could reassure you about premature menopause etc. I had no problems, but it is very clear that others have. You may already know that Methotrexate is used by the NHS for abortions. You are obviously a sensible and articulate person. Please DO tell your rheumatologist/nurse specialist about your concerns, and properly discuss alternatives.

    Methotrexate did affect my mental state, and I see that this seems to be reported on sites like this quite often.

    One final comment. My online reseach has shown that some folks with Psoriasis (an autoimmune disorder) also have underactive thyroid glands and low thyroxine (hypothyroidism) because their immune system attacks the thyroid. Low thyroxine causes joint pain, tiredness, low mood & depression etc. -I used to get angry when the traffic lights turned red as I approached, or if the trolley of another supermarket shopper was between me and the shelf I wanted to get to. -Sound familiar? Ask your GP or whoever for a thyroid function test. You are probably ok, but it's worth checking... Please report back here -I'm very interested in this.

    And yes, you are normal :-) . You have a worrying condition, have been prescribed a worrying medication, and have some worrying decisions to make.

    My heartfelt good wishes for the future and a through-the-internet hug.

    Sue

  • Guest
    Guest

    Posted

    i have just been prescribed methotrexate by injection for rhumatoid arthritus buy i also have a underactive thyroid i suffer with depression mood swings i feel that i had no option but to go on methotrexate as i was not offered any other medecation this will be my forth week i have not had any side effects as yet but i am worried about my future on this drug i am 56
  • Guest
    Guest

    Posted

    I too was given methotrexate for Psoriatic Arthritis and stuck it out for 13 weeks, during that time, I felt really down, which is not me, legs were like lead, and have not been right since, nearly two years, my hair growth doubled and I was'nt me. After telling all this to the Rheumatologist, she increased the folic acid. I stopped taking methotrexate then. Since then I have tried Sulphasalazine and Leflunomide, without success, both made made my hands swell up. They are still trying to get me to take Methotrexate and I keep refusing, I am also not in their good books!
    • peter05301
      peter05301 Guest

      Posted

      I have had 3 episodes of autoimmune illnesses. The for first in 1992. Ulcerative colitis. Went on for years with just moving from steroid to steroid. Eventually settled on good old prednisolone. Got to to the point after about 10 years where I couldn't get below 20-25 mg without a flare. Was all ready for a ileostomy. Then as a last chance I was put on a DMARD called azathioprine. It took two months to get going. After that not one single flare! But I was by then steroid dependent. I also had serum negative rheumatoid arthritis.

      After 18 years of 20 mg of pred they obviously wanted me to come off it. I have no sign of osteoporosis. Doc puts that down to exercise. Anyway I was taken off of prednisolone 20mg and put on hydrocortisone 30mg. That is only 37.5% of the anti inflammatory properties of pred. I felt great. For the first time in years, no anxiety, no feeling hot all the time, no sweating, no agitation, no aggression and no chance of osteoporosis. After 5 weeks however, 1 morning, I woke up and couldn't move coz of pain. I could just about get out of bed and downstairs with my arthritic fingers cooking became a

    • peter05301
      peter05301

      Posted

      Continued!!!

      Cooking became a nightmare. So my rheumatologist tried me on methotrexate. I've never been so Ill in all my life. Managed to get my rheumatologist to put me back on the DMARD ID been on before, azathioprine I'm already just starting to feel benefits. After about 10-11 months of a mystery autoimmune disease which could only be held at bay by morphine and diazepam to stop the pain. Coz I even tried going back on to pred but now that didn't help. I'm only saying that azathioprine worked for me. No side effects and does seem to be starting to take effect. Ask your specialist coz it has worked wonders for me.

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