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Methotrexate RA

Posted , 14 users are following.

chris73946
chris73946

Hey everyone, quick question, I have been on methotrexate for my RA about 5 weeks now and the side effects are terrible for me, stomach pains, nausea, extreme fatigue, so I called the doc and told her and she wants to try injections of methotrexate now, my question is I have read a lot about this medication and I do not like what I have read at all I would much rather not even take it because of the reviews and what it does, do you think the doc would get mad if I told her I prefer to be on something else I have looked at hundreds of reviews and maybe 10 of them were positive the rest said to stay away from it, I wake up every morning with stiffness and cannot extend my leg, swollen hand, sore jaw etc, do you think she would put me on something else, I just don't feel comfortable putting this in my body after reading the horrible experiences I don't know if this medication would help or hurt me more

Thank you

1 like, 61 replies

61 Replies

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  • Jayne7831
    Jayne7831 chris73946

    Posted

    So sorry you are going through this.  I was diagnosed last october and immediately went on mtx.  I demanded NOT to take the pills from all I had read and my history of stomach upsets.  Mtx must surely b the gold standard of ra as it seems everyone begins here.  It is also used for many other diseases in different strengths.  I was very lucky to have no side effects from the drug when taken by injection. My numbers went down and the dosage increased.  Still no side effects.  From what I have read here, the side effects do tend to lessen with time as the medication begins to work.  I still have the symptoms you describe though not as severe as before.  This ra is constantly working on us!  I see new rheumy this month. I too am hoping for a med which may relieve some of the pain and give me some mobility back!  Though it cannot be a biologic as I'm from U.S. And it is unafforable even with my insurance.  Guess what I am saying is maybe you could give injections a try and possibly give it a little more time.  RA is a lifetime thing and I know sometimes the meds take a longer time to work.  Best of luck!

     

    • rita37849
      rita37849 Jayne7831

      Posted

      Jayne

      If your rheumatologist does prescribe a biologic many of the manufacturersurgery have copay assistance programs to assist in the cost. You can usually find this info on their website.

    • rita37849
      rita37849

      Posted

      Supposed to be manufacturer, don't know what my tablet thought I was trying to say lol

    • sherry29159
      sherry29159 rita37849

      Posted

      It works differently in the UK. Its on NHS. If bios are needed and you qualify you get them free.
    • Guest
      Guest Jayne7831

      Posted

      Jayne, I am on Humira and you can get it for $5 a month, hardly any questions asked. Your doctor has to prescribe it and they will do their thing and approve you. You have to be on DMARDS for so long. After you get approved someone will call you and you ask them about financial assistantce in paying. They will ask you if you have private insurance or gov assistance. If you have any questions just ask but you can get it without paying that high cost. 
    • Jayne7831
      Jayne7831 Guest

      Posted

      We are not wealthy, but we have never received any financial assistance.  I have good insurance, but they want $2747.00 for 4 injections.  Unless those 4 injections last me all year (humira), i really cannot afford!  Stuck in the middle!
    • rita37849
      rita37849 Jayne7831

      Posted

      Hi Jayne. Check out the website for the company that manufacturespecializes Humira. I've not been on it in a while since it didn't work for me, but the program that turned it into a $5 copay wasn't income based. Enbrel also has copay assistance and so does Xeljanz. Thank goodness because I couldn't afford it otherwise. I hope you can find something that works.

    • rita37849
      rita37849

      Posted

      Once again that was supposed to be manufactures my tablet is insane
    • Jayne7831
      Jayne7831 rita37849

      Posted

      Thank you...never heard of one that was not based on finances.
  • Guest
    Guest chris73946

    Posted

    Tell her. If she gets mad, go ahead and take it for a few weeks then tell her it is making you sick. When I took it, I hated it. The day after you are wasted and live in a fog all the time. I didn't take injections though. 

  • slm222
    slm222 chris73946

    Posted

    Hi Chris, I started on Leflunomide and had instant relief with very little side effects. I went to another Rheumatologist and she immediately wanted me to switch to Methotrexate. I hated it. It made my pain come back and made me sick 24/7. I demanded to get off of it. I'm on my 3rd Rheumy now and finally like this one. I'm now on Leflunomide and Sulfasazadine or however you spell it. I don't feel any better with the sulfa drug added, but my inflammation markets are down. Don't feel you have to take the MTX. It's your body and everyone reacts to RA drugs differently. You get to choose. Good luck!!

  • hope4cure
    hope4cure chris73946

    Posted

    Hi Chris, 

    It sounds like you are suffering some of the side effects of this drug. Explain all the effects to your dr that u have been suffering from MTX. 

    Also ask if you could try something different. There are other meds that can help in conjunction with MTX or separately to slow down th damage to the joints from RA. 

    No fun suffering from the side effects and not helping with RA.5 weeks is long enough for your body to show some improvement. Also ask for meds for nausea and pain meds until your better. MTX is a form of chemo therapy at a lower dose than that of cancer patients has been used for many other health issues for years. Some people react differently to medications. 

    Set an appt. up and tell the nurse that you may need to change meds due to the illness you feel from MTX.

     

  • Rowbirdie
    Rowbirdie chris73946

    Posted

    Hi Chris

    just a thought that you are more likely to have problems with mxt posted on forums than that it s ok- just the nature of reviews and forums.

    it is the gold standard o treatment because it works for many people. But, as you ve found, the side effects are too awful for some, some get no benefit, and a very few are made I'll from it.

    maybe you could try the injections and just see?

    but, as someone else posted, there are alternative DMARDS. But if at some point in the future you were to need a biologic to control your ra they are often ( but not always )used in conjunction with mxt.

  • natasa24657
    natasa24657 chris73946

    Posted

    Hi Chris

    I was on methotrexate for one year and I thought I was cured but unfortunately my liver function was too high with it so now on Sulfasalazine but not working. Everyone is different so I would go for the injection and try to persevere with it

    • ruth86
      ruth86 natasa24657

      Posted

      Hi was just reading your post and wondered how you are getting on with the sulfasalazine as these are making me ill headache / dizzy/ spaced out feeling/ sick feeling / hot / palpatations just ill, i have stopped taking them i couldnt even get up to 4 a day max that my doc wanted me to go on, do you have any side effects or are you managing fine with them? ive been on them since last oct and feel like side effects are getting worse not better as longer take them body getting use to them but seems to be opposite with me felt great while started on them all RA signs   better, still RA signs better but side effects of meds not and seem to get worse xx 
    • sherry29159
      sherry29159 natasa24657

      Posted

      RA is never cured just controlled. If these drugs fail to contain the progression then you are able to go on the biological drugs but you do have to go through a few hoops to get these drugs but from what I hear its worth it. Doctors have to treat us with all the cheaper drugs first such as sulfas and MTX and some people live happily on them. But some, like me, have found that the effects of these drugs has worn off. So now started biological and have high hopes.

    • ivan17274
      ivan17274 sherry29159

      Posted

      hi sherry.read yr reply bout MTX.i always suspected they put you on cheapest drugs 1st.to me makes sense.only so much money go round.forgive my ignorance,but what do you mean by biological?what are they?many thanks Ivan.
    • sherry29159
      sherry29159 ivan17274

      Posted

      Hi Ivan.

      You are not ignorant! Its a complicated subject. I started out on this journey without a clue but being obsessed with doing research and googling I have learnt a lot. Biological drugs are a relatively new way of treating RA. They have been used for about 10 years now. But they are mega expensive! So you have to fit the criteria to apply for special funding to get them. This means you have to have tried all the usual drugs like MTX and sulph. If after you have been on these drugs for some time but the disease does not respond to them you should be offered the bios. But you have to be assessed and bloods show the disease is very active. If so then funding will be applied for (to NICE) and you wait for their decision. I was accepted and put on a bio drug (rituximab). I have heard wonderful things and have spoken directly to people on them. They can take up to 3 months to kick in so its early days yet for me. Hope this all enlightens you a little! Can't type any more right now!

    • Rowbirdie
      Rowbirdie sherry29159

      Posted

      Hi Sherry

      rituximab works for me! perhaps even better the second round than the first.

      Hope this works for you soon. Glad you were accepted for funding.

      i so agree about doing research and googling.

      many of us wouldn't try any of these drugs if we were put off by the side effects but you have to offset that with having RA controlled. For me the pain has been so bad and so many joints affected I m prepared to try whatever, as long as it works and I trust the doctors to monitor my bloods so no damage to liver etc

      they have to list possible side effects to alert you to anything going wrong- but mxt is used successfully for many which is why it's a first line treatment, not just cos it's cheap! Actually it's used at about one tenth strength for RA  than when it s used for cancer treatment. So it does frustrate me when people think their Drs are trying to put them on something bad.

      There are some for whom it doesn't work, causes too severe side effects or causes chest or liver problems , but you don't know about that unless you try it.Fortunately there are other alternatives.

      i am currently taking mxt sulfasalazine and hydroxy plus rituximab. This has given me freedom to walk, swim, line dance, have a social life in the evening again. Yes I have some mild side effects eg mxt fog or maybe even sulfasalazine fog! Who knows? I still have to pace myself and sleep for more hours than I used to .But I have almost no joint pain.

    • sherry29159
      sherry29159 Rowbirdie

      Posted

      That is good to hear! When I said they have to try the cheaper drugs first I didn't mean they were any less good. They are fantastic and work for many. They worked for me too at first but finally stopped. But they can't just dish out the expensive drugs unless a patient has reached the point where the cheaper drugs don't help. I recall saying to my rheumy nurse that I felt bad to be getting bios when others don't. She said anyone who NEEDS them will get them. It would be pointless giving them to people who are doing fine on MTX etc. I am so grateful to be offered rituximab and feel that they are available to everyone if they need them.

      I concur with all you say and look forward to enjoying a social life again. Because I am already on a cancer drug I was worried when I learnt that MTX was a cancer drug and asked my oncologist if it was dangerous. She smiled and said the amount I was getting was so tiny it was a drop in the ocean compared to if used for cancer. So I was happy.

      Sherry

    • sherry29159
      sherry29159 Rowbirdie

      Posted

      Oh btw Rowbirdie if rituximab works for me is line dancing compulsory? I have never learnt to swim so that will be an added bonus.

      Sherry

    • Rowbirdie
      Rowbirdie sherry29159

      Posted

      Hee hee- Absolutely!! It s such fun.

      i was looking for some way to exercise after RA improved, 

      First thing I did was hydrotherapy- fortunate that local arthritis group organises it at the hospital. Couldn't fancy cold swimming pool at that point.

      Then joined a beginners line dance group. ... And got hooked! I m not really an exercise person but moving to music suits me! 

       

    • sherry29159
      sherry29159 Rowbirdie

      Posted

      Oh lucky you. I keep being told aqua exercise is good but can't work up enough courage to get in a cold pool. I don't have any groups near me. I may well go in for the line dancing yet! Sounds fun!

    • rita37849
      rita37849 sherry29159

      Posted

      The gym that I go to has a warm water therapy pool. The arthritis water classes are wonderful. Not brave enough for the cooler water very often.
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