Methotrexate concerns

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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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  • Posted

    Hi, I've been taking methotrexate for 14 years and recently had bad digestive problems & itching which doctors say sysymptoms are not related to the methotrexate. I was recently put on 10mg injections instead of the tablets.

    I was wondering if you or anyone has had strange feeling of weakness, palpitations, a fluttering feeling in the chest with sick feeling.

    This starts after 7-8 hours of having the injection and is a really scary feeling. It definitely only happens after the injection each week

    • Posted

      Hi Ellie!

       It’s been 10 months since you asked this,  and I hope you are doing fine, there’s a chance you’re symptoms could be cardiac. I only say this because they started after a change in dose and method of administration. Anytime that happens we get more concerned. They are also symptoms of anxiety, frequently called panic attacks. This feels the same as having a heart attack many times. It’s a ghastly feeling. Here’s to hoping you did fine.

       By the way guys, after my comments today I won’t be answering questions medically speaking. These questions just caught me offguard starting with the one who had the pulmonary problems. Are usually only speak as a patient, as I have psoriatic arthritis and Sjogren’s syndrome and Raynaud’s. 

  • Posted

    Dear ellie,

    I am also on Methotrexate Tabs for nearly 14 years now for my Psoriatic arthritis. I have luckily no serious problems whatsoever luckily. Your doctor may be right when he says your symptoms may not be caused by MXT. I am curious to know why were you shifted to Injections instead of oral recently. Did your new symptoms prompted the switch from oral therapy ? Otherwise it is a well considered rule- always prefer oral to injectable therapy in long term treatments. Regards

  • Posted

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    • Posted

      Oh my goodness Karen, I am so sorry to hear about this - I am only glad that you came through it all right!  Disgraceful that your doctor didn't take you seriously.  I hope you are ok now.

    • Posted

      Karen, I am so sorry for what happened to you. That’s a black box warning about that drug although it’s exquisitely rare. No one should prescribe a medication unless they  understand all the risks and benefits of it. 

       Straight from the drug company’s mouth:

      “Methotrexate therapy can produce potentially fatal pulmonary toxicity, including acute or chronic interstitial pneumonitis and pulmonary fibrosis. Methotrexate-induced lung disease may occur acutely at any time during therapy, has been reported at low doses, and is not always fully reversible. Pulmonary symptoms, especially a dry, nonproductive cough, may require treatment interruption and careful investigation. Pulmonary function tests may be useful if toxicity is suspected, especially if baseline measurements are available. Therapy should be discontinued if the patient develops pulmonary symptoms such as fever, dry cough, dyspnea, chest pain, hypoxemia, and radiographic evidence of pulmonary infiltrates.

       ***Pulmonary reactions are rare but usually occur during the initial period of methotrexate therapy.***

      The following are risk factors for pulmonary toxicity in rheumatoid arthritis patients treated with methotrexate: diabetes mellitus; older age; rheumatoid pleuropulmonary involvement; previous use of the disease modifying drugs sulfasalazine, gold, or penicillamine; and hypoalbuminemia. In nondiabetic patients, hypoalbuminemia and previous use of disease modifying drugs are the most important risk factors. History of pulmonary disease, extraarticular manifestations of rheumatoid arthritis, smoking (men only), and non-sedentary occupations (women only) have also been suggested as risk factors for methotrexate-induced pulmonary toxicity. Methotrexate should be used only in life threatening neoplastic diseases or in patients with psoriasis or rheumatoid arthritis with severe, recalcitrant, disabling disease that is not adequately responsive to other forms of therapy. Only physicians whose knowledge and experience includes antimetabolite therapy should administer methotrexate due to the potential of serious adverse reactions, which can be fatal. Deaths have been reported with the use of methotrexate in the treatment of malignancy, psoriasis, and rheumatoid arthritis. Closely monitor patients for lung toxicities. Patients should be informed by their physicians of the risks involved and be under a physician's care throughout treatment.“ This is from PDR.net

      It can also cause extremely dangerous rashes and temporary or permanent damage to your bone marrow which makes all the cells of your blood.  

      Again, severe or lethal side effects are really, really rare, but when it was only used to treat patients with cancer, that was fully acceptable. People with arthritis aren’t going to be dying if they don’t take this. They may wish they were when it gets extremely bad and painful, but taking a chance of dying immediately isn’t really worth it. You should always discuss any new medication at great length with your doctor, and it doesn’t hurt to look it up online ahead of time, so you can figure out more of what he’s talking about, or discover parts he forgot to tell you about.  Like how it doesn’t work that well for people with psoriatic arthritis and the risks are awfully big for something that is not that effective.

       But back to the minor side effects that are really really common and drive us nuts as women, does anybody else have problems with their hair not taking the color anymore or evenly.  I was taking methotrexate for a total of three months before we decided it was a failure. During that time, my hair  diameter became 1/3 to 1/4 of what it used to be and there were a lot fewer hairs altogether. That was helped somewhat with folate (1 mg) and biotin (10,000 mcg).  But what what is an ultimate fail was the hairs inability to pick up all the parts of the hair color. I hate grey! My hair was normally a chestnut brown with red highlights, and I’ve been trying to keep that going after menopause. What a shock when suddenly my hair was only picking up the red highlight color. I now have a three-month white stripe on my head. Has anyone else had a problem with picking up brown hair coloring?  It looked good the day she put it on my head, but after the first wash...RED!

    • Posted

      Thanks for the info. I was warned of the risks, when the doctor told me about them she sounded like the TV commercial that talk really fast and the end about all the side effects.. She also told me insurance would not pay for any other med until l i tried this one first (yeah right!) Thanks again.....
    • Posted

      Thank you. Now I cracked a rib closing car door with side of body my hands were full . Im presently weening off prednisone that was helping my lungs. Prednisone is a great drug but it can make you bones brittle. What a trip this has been... .                                                                                                                                                    
  • Posted

    I am both the patient and a physician.  My field of expertise has nothing to do with rheumatology. I have done a lot of research on psoriatic arthritis though,  I have access to journals that laypeople cannot read. ( they are accessible only to doctors.) Amongst  physicians,  methotrexate is a wonderful drug for rheumatoid arthritis, extremely effective. It is not very effective for psoriatic arthritis, only a smidge higher than placebo effect. The more you believe in your doctor the better it works. I actually think that’s a good thing.  Unfortunately I know too much and it did me absolutely no good. All it did was increase my hair Hair loss and make it thin.  I get my hair colored as I’m 59 years old, and the biggest effect, other than the two prior, is that it picks up red without the brown now. My hair is dark brown with red highlights naturally, or it used to be. But now my roots are red (and then eventually silver.) It looks really bad. I stopped the methotrexate after three months of failure, so now I have a stripe.  A three-month wide stripe. Anybody else have the problem with hair color?
    • Posted

      I think that's great, the only problem that you are having with Methotrexate is your hair not being able to be dyed because you don't like gray hair. I think that's great. I also see on here that a lot of people are talking about weight gain. Is it the Methotrexate that's causing the weight gain or is it the steroids that everyone is taking with the methotrexate? I do know this steroids cause weight gain.

  • Posted

    Thank you for your post. I am only two weeks into 5mg/wk treatment and am keeping a daily log of my pain level, food intake, exercise, and any other issues.

    I am only 41 and after 2 years of pain in my wrists (and steroid shots in each one, several times) my orthopedic specialist referred me to a rheumatologist. He looked at my MRI and concluded it was a type of inflammatory arthritis, with evidence of bone and joint damage already.

    I earnestly want to prevent additional damage and stop the pain/stiffness, but with even this tiny dose I feel completely worn out, headachy, without any pain relief at all. I am going to give it "the old college try" for the next three months, but I can't help thinking that my daily dose of Aleve and steroid shots were better than this!

    Of all the things I've tried over the years stretching/yoga/ light exercise first thing in the morning to help with the stiffness.

    Have you found a treatment plan that works for you?

  • Posted

    Read your story with interest.  I have recently been prescribed methotrexate for suspected psoriasis arthritis.  However no inflammation in  my blood.  I'm not convinced.  Anyway I am very reluctant to take it for the very reasons u describe.  Why potentially solve one problem only to create a whole lot more.  Also people report feeling tired, nausea,  having brain fog etc none of which I want to have .  I feel if I feel that way it's not worth it.  What's the point of decreasing your pain only to suffer those nasty side effects.  So I really am trying to find out how common these side effects are so for now my pills ate in my medicine drawer.  Not sure they methotrexate is the answer and still looking for alternatives.  Terrified!

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