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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

74 Replies

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  • linda31779
    linda31779 Guest

    Posted

    hi, i was diagnosed with psoriatic arthritus two years ago and was prescribed MTX 18 months ago ater trying steroids and naproxen, iv had loads of side effects as u lot have including depression, hair thinning and mouth ulcers, i was stitched from mtx pills 20 mg to methaject 20mg three months ago after discussions with specialist about not feeling any better and struggling to walk. Three weeks ago i had a nuclear dynamic bone scan with has revealed significant further deteriation of joints, im currently waiting to hear off speciaist has hes been on holidays but my gp lightly discussed results with me. 

    SO i guess methatrexate is not working for me, I feel hopeless and dont feel as if im getting anywhere with doctors, i am 41.

  • lyy13133
    lyy13133 Guest

    Posted

    I can only thank you for this message. I have been virtually railroaded into methotrexate because the service is part of it the NHS better tariff ie. they get more money if they stick you on a standard treatment regime and you are on the drugs within 12 weeks. No options, no discussion, no explanation of the side effects in any great depth other than I will feel sick and probably get mouth ulcers. Personally, they can shove their chemotherapy approach. I feel so much better having changed my diet radically and doing yoga. I am not best pleased by being treated like a research monkey.
    • bev1010
      bev1010 lyy13133

      Posted

      Hi, I have only just discovered this sight.I am 53 and have rhumatoid and osteo arthritis , on the max methotrexate and folic acid on the days it is not taken aswell as sulphasaladine.I have been on these for the last 8 years.My hair still constantly falls out , I am permanently fatigued and feel permanently sick.My rhumatologist has now decided that as well as these meds I must have anti TNF injections due to having flare ups every 6 - 8 weeks and requiring a cortisone injection at these times .1xweekly, 1x 2weekly, and 1 x monthly.He dismissed the idea when I suggested stopping the methotrexate but it is clearly doing me no good.I really don`t want to have to give myself  these extra injections but he`s adamant I need them. Could I ask what your CRP levels were in your bloods to determine how active your condition was.I am tempted to try without meds against advice after reading msgs on this forum , it`s a worry. 
  • sallie09026
    sallie09026 Guest

    Posted

    After spending 9 months on Methotrexate (with 2 systemic cortisone injections during that time) finally the Rheumatologist admitted that it wasn't working ...I can hardly recognise myself in photos of that time and memories of that winter are of terrible pain and loneliness.  Then we had 6 months of leflunomide with steroids before being taken off steroids (when I reminded the Rheumatologist I was still on them) and then finally taken off leflunomide as my WBC was so low.  6 months later, I feel better for being off the leflunomide although after repeated infections due to the WBC I am now on a 6 month low dose of anti-biotics.  My new rheumatologist doubts my original RA diagnosis and has ordered more tests.

    During the summer, I started to feel nauseous and lose weight, generally feeling yucky.  On Friday I was diagnosed with hypothyroidism (doesn't really fit with the losing weight symptom but nevertheless) and put on thyroxine for life.

    As always, I have spent a lot of time reading up on this and I am wondering if I ever had RA or if I have always been suffering with hypothyroidism.   What do others think?

  • lyy13133
    lyy13133 Guest

    Posted

    The real shock for me was finding that for between 50-70% of people diagnosed as early stage inflammatory arthritis it is a transient illness. I refused methotrexate and have stabilised the RA. I have no inflammation, my ESR has dropped consistently and the CRP is a quarter the original count. There is no doubt that had I taken methotrexate I would be told these numbers were the result of medication. I am sick of the doctors refusing to help people who may have a transient illness and who need a different approach and who may not have to have body damaging drugs but could be helped in a different way completely. At present there is a very suck the drug and see attitude. While it does work for some, it is not a panacea ( unless of course you are a shareholder in the methotrexate drug company).
    • brenda05405
      brenda05405 lyy13133

      Posted

      So happy you have been able to control your RA. I had refused some of the other drugs offered as one of the side affects was death,but as I am getting older (66) I am relying on my doctor and his credentials to keep me walking. Methotrexate has been around for over 30 yrs so I thought it might be safe enough. Of course my diet and exercise are an important part of my daily fight. No serious side effects yet
  • eh457
    eh457 Guest

    Posted

    I have been on Methotrexate for a skin condition (Morphoea) since I was 10 years old and have moved up from 10 to 20mg. During this time I have taken it via tablets, injections, and oral suspension, all of which make me feel ill and down the next day. 10 years on and it still the only medication that can halt and reverse the spread of my condition so it's just something I have to stick with (as much as i hate it) if I don't want my condition to be a problem.
  • niki88
    niki88 Guest

    Posted

    I'm 26 and have psoriatic arthritis. I've never had psoriasis but I have the arthritis. I started getting symptoms 2 years ago and was referred to a specialist at the hospital. After a course of antibiotics, many steroid injections, a biopsy, X-rays and MRI scans I was finally referred to a rheumatologist. I was then diagnosed with psoriatic arthritis.

    They initially put me on a course of Methotrexate tablets. I found that they only made my my arthritis worse. At first I only had arthritis in my finger. It is now in my toe and I now have back pain and my knees sometimes swell up!

    I had to come off the Methotrexate as they made things worse and I was also feeling sick and depressed. They then put me on Sulphasalazine and again I didn't see any improvements. I went back to the hospital and they wanted to put me on Leflunomide but then said not to take the tablets and to have the Methotrexate injections instead.

    I really don't want the injections. They have so many side effects and I have no hope left that they will make things better. I have been reading about the benefits of a change in diet and that going vegan has helped many people with arthritis so think in going to try for myself.

    I'm now having to go for and MRI scan and xray if my spine as I think it has spread.

    I don't like the idea of being on medication for the rest of my life so hopefully changing my diet will help a lot.

    Has anyone else seen improvements after changing their diet it using natural remedies?

  • johnfs49
    johnfs49 Guest

    Posted

    I have been on Methotrexate for 13 years and luckily have had no problems with it.

    I am on 20mgs once a week and take 5mgs of Folic Acid  on the other 6 days which i was told would countact any side effects.

    I am a man 65 and weigh 220 lbs

  • Natalia97
    Natalia97 Guest

    Posted

    Hi. I have juvenile orthopaedic arthritis and I'm starting methotrexate next week and I'm verry woried about the side effects. Would you recomend the injection or the oral pills? Grateful for answers!
  • peter05301
    peter05301 Guest

    Posted

    Well said. I was "fortunate" enough to have a dreadful toxic reaction to methotrexate. So will now not be going on to the drug. I will be going on to a drug that I know will be ok for me. Azathioprine. I took it for 10 years for colitis and never had a single flare after starting to take it and was declared colitis free in 2013. No side effects. People I know who are on methotrexate say they always feel ill. It keeps their disease at bay, but they always feel ill. So perhaps I had a lucky escape although 5 days of being terribly ill wasn't pleasant.
  • lynne42182
    lynne42182 Guest

    Posted

    Thank you, I've just taken my last dose, I spend most of the days around taking it up throwing up and feeling like crap, I'm now once again trying to get myself to eat something, any way enough of my woes, it a relief to know that I'm not alone x
  • Cs100
    Cs100 Guest

    Posted

    Clearly everyone's experience of even similar dignoses, is different, as well as their experiences on medications.  I dont like taking Methotrexate, especially as it is mainly a preventative measure, so I have no idea whether my RA/PA would have improved without it. All I know is I was in real pain and am I hardly at all now.  I dont like the side effects of the drug, but I tolerate the injections much better than the tablets.  I think this is because the injections bypass the digestive system entirely, so no nausea etc.  Also, because it goes straight into the bloodstream, its stronger, so I can be on a much lower dose(15mg).  This is important, as on higher doses I felt terrible.  It would be great not to have to take it, if the pain stays away, and if diet and exercise work enough...
  • sandra_31801
    sandra_31801 Guest

    Posted

    I took my first Methotrexate shot on 10/29 0.03 mg  due to my numbers going from 9to 15 in which I'm taking Placquanil twice daily since then my stomach has been hurting in which I've Hiatal hernia, Gerd, Gastritis I called my GI doctor to inform him he told me to take Omeprazole twice daily which didn't help, so last Thursday on the 5th I returned to my Rheumotologist in which I told the nurse I'm not taking Methotrexate anymore while waiting a patient told me about Sucralfate which I've been taking once daily with Omeprazole so I'd some Prevacid took one today with Sucralfate not as bad as yesterday but going to GI doctor tomorrow I hope he can give me something to relieve my stomach ache because my prescription plan doesn't allow certain meds without prior approval  . I've finally got approved fo Benlysta awaiting for delivery I hope that works . 
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