RA Methotrexate

Posted , 14 users are following.

Another question.  Have all of you been started on this medication and what have your side effects been?  Thank you. Kay

0 likes, 16 replies

16 Replies

  • Posted

    I have started week 2 of methotrexate and so far no side effects, but maybe too soon to tell yet. We’ll keep you posted
  • Posted

    Hi, I was on methotrexate for about a week and ended up in A and E with terrible gut issues, but I have IBS as well as RA so it could havd be down to the IBS, but I think plenty of people tolerate it.
  • Posted

    Hi Kay,

    This drug worked well for me for about a year.  At first the only side effect for me was mild hair loss, which abated after a few months.  At the end of a year it started to effect my liver, so I was switched to Leflunomide.  My liver levels are back to normal and this med is working for me.  Best of luck to you.

  • Posted

    Hi Kay, it’s a very effective drug for many people with RA but it’s also a very toxic drug which needs extremely close monitoring.  I took it it for about 2-3 years but had to reduce the dose because my neutrophils (white blood cells) dropped too low. I stayed on maybe another year or two but developed a “silly” cough which no one took seriously. I was persistent thank goodness and I have lung fibrosis now which has still not fully resolved. I suppose I’m stuck with a chronic chest now which is a blooming pain on top of my joint problems. I know lots of people tolerate it ok but it’s not good when it’s you.  My advice, if you choose to start it report  any symptoms you are concerned about and be persistent. My chest symptoms did NOT show on X-ray.  Good luck whatever you decide. Carol
  • Posted

    I was started on this. After a few weeks I became extremely breathless. I stopped the drug and within a few days I was back to normal. I would not consider this again. 
  • Posted

    This is a very affective drug for most, but for me it caused a host of issues. I used injectable because I have a very sensative gut and was concerned about the GI upset. It didn't matter tho. I experienced extreme fatigue daily, nausea 3-4 days a week, elevated liver function tests, hair loss, and while I am normally a pretty upbeat person but I felt so down, depressed and hopeless while on this med that it scared me. After 10 months my rheumatologist took me off of it and now I'm on Enbrel. It does more to help my RA symptoms without as many intolerable side effects for me. Keep in mind we are all different and most people do tolerate this med very well. I'm just one who didn't.

  • Posted

    Hi Kay, I've known people who have done very well on this drug but I'm afraid it didn't suit me, hair loss and nausea and like Carol I ended up with fibrosis of the lung ( not curable ). You will be closely monitored, any sign of a cough or breathlessness I would recommend you report it, good luck, you could be one of the lucky ones.

  • Posted

    Hi Kay, I have been on methotrexate around 18 months. I started with tablets, which did upset my gut but which were bringing slow improvement to my symptoms over about 4-5 months. I went on to weekly subcutaneous injection. My RA symptom response has been far better since moving to injections, and I don’t notice significant gut effects now. 

    I also take hydroxychloroquine (plaquenil). My symptoms are presently minimal most of the time. 

    I may have had a little hair loss, but can’t say for sure. I may have had some initial fatigue-type response, but I could not definitely distinguish that from being a symptom of the RA itself. I definitely had fatigue with the onset of RA, and it is still an issue, but far less so, and only intermittently. 

    I do my injection each Monday, followed with 5mg folic acid tablet each Friday. You will see people refer to following various folic acid supplementation regimes, the one I follow just happens to have been determined as standard in my country’s national health system.

  • Posted

    I have been on MTX since Sept. 2017along with  steroids til March 19,2018.  No more steroids and symptoms are worsening on knees.  Seems the steroids have been masking my symptoms.  The worst side effect is the loss of my hair.  I used to have beautiful thick and long hair and now it is at least half of the thickness where I had to cut most of the length off.  I am taking 3mg. folic acid daily.  Still losing lots of hair.  may have to look for wig if this continues another month or so.
    • Posted

      I’m not familiar with biological drugs. What do you know?
    • Posted

      Hi, biological drugs have been out a few years now, a lot of people with RA end up Biologicals, in the UK you have had to have tried at least 2 other medications, I am on Benepali a biological after being on Sulfasalazine for several years I tried Methotrexate but could not tolerate it, my inflammation and joints were getting worse, so the Rheumy put me on Benepali, you have to have some tests first for things like TB, HIV, etc an chest Xray, I inject mine once a week, pre filled syringe just press it on your leg, you get full instructions from a nurse, mine works great and no side effects.
  • Posted

    Hi Kay, I have been on methotrexate for about 15 years now and realised that it is a necessary evil. It has been keeping my RA under control, but I have regular blood tests to make sure it is not affecting the Liver. The main side effects I faced when I started on it was hair fall, but that is under control now. Nausea has always been with it, even after all these years. I usually take it on Fridays, and it makes me nauseous with loss of appetite the following Saturday and sometimes into Sunday too. Hope this helps. 
    • Posted

      I was switched from tablets to subcutaneous injections of methotrexate. The result was an improvement in my RA symptoms and relief from similar side effects. I had to grit my teeth a bit to do the first one from an aversion to needles, but they’re really not difficult or painful to administer. I’m not sure if they’re an option you could try, but just thought I’d mention it. 

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