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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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  • ivan17274
    ivan17274 chris73946

    Posted

    hi Chris.i had this dilemma years back.should I shouldn't I.at the time I was always a easy going man and did what was asked.i got to no load of folk with ra.they told me keep away from my.i did.was never offered it.one night rushed into hospital.paramedic and I talked.he amazed me by saying"do yourself a favour,dont do it if offered.and I've stuck to that when 2-3yrs later offered it.i was nervous when said NO!!I shouldn't have been.doc was fine.the docs are aware of risks of mtx.its your life.is it worth risk?take care buddy.ivan.

    • Rowbirdie
      Rowbirdie sherry29159

      Posted

      Excellent article Sherry giving statistical evidence for advantages and side effects of mxt. This is a great website for all RA info- but I d not read that article before.
    • sherry29159
      sherry29159 Rowbirdie

      Posted

      Thanks! I have read that article and tried to link it on here a while back but wasn't successful. I owe much to MTX but sadly it is just not working for me anymore. I have started rituximab and hope to see some improvement with that but 4 weeks in and I feel worse!

      Take care x

    • Jayne7831
      Jayne7831 sherry29159

      Posted

      Excellent informative article....never heard of not taking folic acid on day of injection...any ideas or information on this?
    • Rowbirdie
      Rowbirdie Jayne7831

      Posted

      Hi Jayne

      i ve seen lots of different regimes posted on the forum, but no one having folic acid on the SAME day as mxt. I was told to have same number of mg folic acid as mxt day after- I thought mxt doesn't work as if you cancel it out the same day with folic acid . But I know others have less folic acid and spread over the week. So I m puzzled too!

    • natasa24657
      natasa24657 Rowbirdie

      Posted

      Hi

      I used to take my methotrexate on a Monday and it was 5mg of folic acid on a Wednesday. You can't have it on the same day as it don't work

    • sherry29159
      sherry29159 Jayne7831

      Posted

      Folic acid is definitely not to be taken on day you take MXT. It weakens the effect of the MXT I have been told by all docs and nurses. They should make this clear to everyone.
  • sherry29159
    sherry29159 chris73946

    Posted

    Hi Chris

    I am on highest dose of this drug and inject it. Initially I didn't like it but I have adjusted to it. Its a cancer drug and to help the disease you have to endure side effects. But if you are feeling so bad its obviously not for you. I just got such relief from pain I carried on with it. I am sure there are alternatives and you must ask about them. Sadly I think RA is such a disease that you need to contain it or it will just get progressively worse. Strong drugs are needed but you must find a compromise as to which drug you can cope with. There are a lot of people on MTX who have got relief and stay pain free. Don't be afraid to ask for an alternative drug and good luck!

    Sherry

  • ruth86
    ruth86 chris73946

    Posted

    Hi chris i would say its up to you what medication you take not the doctor, they can give you medications to slow progress down and help you but at the end of it all its up to you if you take it or not, i would have chatt with doctor and say how there making you feel and you would like to try something else as you not happy with having to live with these feelings eveyday and see what else they can give you good luck with it all xx
  • lyn1951
    lyn1951 chris73946

    Posted

    I have been on MTX for over 10 years now. 

    It is the only thing that is giving me some relief with very little or no side effects.

    I was started from a very low base 5mg once a week, and then every 6 months, and lots of blood tests later upped another 5 mg, so took years to get me onto the dosage I am on now at 35mg injectable.

    A new drug came available less than 5 years ago now, Leflunomide, 10mg helped me, so rheumo decided that 20mg of leflunomide would be better, nearly killed me, extreme high blood pressure, apparently i fall into a small group of patients 2% from what I have been told that cannot tolerate the 20mg dose. 

    Then biologicals came availbale, one of the tests they must do for you is have you been exposed to TB and do you have antibodies in your blood.

    Unfortunately I have been exposed and have those antibodies, also having had cancer rules out the biologicals for me.

    Hoping in the future they do come up with something that helps, as my family riddled with auto immunine problems, I got the arthiritis. others have other issues.

    • sherry29159
      sherry29159 lyn1951

      Posted

      Lyn I have had cancer and there are bios which are safe to take. I have just started rituximab. Most of the bios are considered safe for cancer patients now. Not sure about the other issues though. I started on MTX couple years back and now inject on high dose. It was great at first but I became immune to it. Hoping bios will help me. Hope you find something that works for you. X

    • lyn1951
      lyn1951 sherry29159

      Posted

      Sherry - Tuberculosis positive or TB tests have ruled me out of alot of the biologicals.  I have a very thorough considered one of the best in her field rheumo, she fears for me and has told me that to my face. Nothing works, or I am allergic, or have dangerous side effects, ie the leflunomide.

      She now has me on leflunomide 10gm, every day, which it seems I tolerate, and 35mg of MTX once a week, also 6000mg of odourless fish oil daily, or six 1000mg capsules, 2 x three times a day with food, I have also added tumeric, which is an experiment at the moment, I seem to be tolerating the tumeric, can cause stomach problems for some. I have monthly blood tests which to date are in the normal range thank goodness.

    • timothy11402
      timothy11402 lyn1951

      Posted

      Holy cow. When I was getting my physical at the age of 18 for college, my TB test was positive and they saw spots on my lungs. My grandfather had TB in the 1950s and we thought I may have gotten it from him. So further tests were done with another TB in one arm and a histoplasmosis test in the other. The histo test lit up like the fourth of July. This is a result of being around pigeon droppings when I was growing up and the spots on my lungs were calcium that was sectioning off the germs from the rest of me. No further consequences were noted in the following decades and the lung spots apparently no longer show up. 

      So... my question is given the above will I be able to use biologics if I need them???

    • sherry29159
      sherry29159 lyn1951

      Posted

      That is so sad to hear. When I was tested for tb I just didn't think twice about it as I thought it would be very unlikely I had tb showing. I was right and forgot about it. From your comments I realise just how lucky I was! Its hard to be told that biologics, which seem to be the magic solution, are not an option.

      I was told that 25mg was the highest dose of MXT and I am on that. When I heard of some on 35mg I was confused. But I googled it and 25mg is the usual highest dose but in certain cases up to 35mg is used. I was surprised at this.

      I just hope you are going to find another option to take that will help you and it comes very soon. You seem to be in good hands which is comforting.

      Stay strong.

      Sherry

    • lyn1951
      lyn1951 sherry29159

      Posted

      I know how my TB antibodies came about. 

      In New Zealand in the 1960's i believe there was a serious breakout of TB, so everybody at 15 or therabouts got a TB test at school, and a couple of weeks later an injections of BCG for that disease, that has come back to bite me on the bum so to speak.

      Having been out of NZ for a number of years now, I don't know if they still carry on the BCG injections.

    • Rowbirdie
      Rowbirdie lyn1951

      Posted

      I just went looking online for info on reactivating  latent TB through use of biologics. The article I read said Rituximab ( which is not an anti tnf but knocks out B cells ) did not cause reactivation.

      i don't think this is a very clear area. bCG happened in uk as a matter of course up till 2005 or 2006 when it was stopped. Does that mean no one in a certain age bracket can have biologics?

      i did not have a bCG in the 1960 s as the test showed I was already immune( ie must have been exposed to it but didn't actually have it) I told rheumy this but it wasnt a problem as didn't actually have tb.

      thankfully the regime of meds you are on is helping you - but I m confused about how they work out who has latent TB.

    • natasa24657
      natasa24657 Rowbirdie

      Posted

      Hi Rowbirdie

      I was going to have biologicals but my TB test came positive. I have latent TB so I have to have three months of antibiotics then can go onto the biologicals.

    • Rowbirdie
      Rowbirdie natasa24657

      Posted

      Hi Natasa

      that s really interesting- so they can deal with latent TB first.

      Hope the biologic works well for you.

    • natasa24657
      natasa24657 Rowbirdie

      Posted

      Hi Rowbirdie

      That is what they said when I finish three months of this special antibiotics then they can give me biologicals But in the meantime my joints are getting worse and now my knees have started getting stiffer. I am on Sulfasalazine with hydroxychloroquine

    • Rowbirdie
      Rowbirdie natasa24657

      Posted

      Are you also on prednisolone ( corticosteroid)to ease inflammation while you wait for a biologic? 
    • natasa24657
      natasa24657 Rowbirdie

      Posted

      Yes but it is not doing anything for me. I am trying tamerik as someone said they are good But each day I am getting worse and can't sleep as neck hurts shoulders,wrist and fingers and they go numb

    • Rowbirdie
      Rowbirdie natasa24657

      Posted

      So sorry to hear that.

      the biologic should make all the difference for you- just really hard to get through next couple months

    • sherry29159
      sherry29159 Cedarhouse

      Posted

      Biologics are drugs. They are given to patients who have failed to be controlled using the usual drugs like methotrexate etc. They are very expensive drugs and funding has to be applied for by your doctors. These funds are only applied for if, after being assessed , your blood readings are showing very high active RA symptoms. Once the funding has been applied for (to NICE) you wait to get acceptance and then can be put on the biological drug. They are relatively new drugs which seem to help people who are given them. Hope this helps
    • Rowbirdie
      Rowbirdie Cedarhouse

      Posted

      Sherry s given you a really good answer. I might just add we are both in the uk. I think funding is handled differently in other countries. In the uk there are specific criteria as Sherry has said. 
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