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Methotrexate

Posted , 8 users are following.

tony09890
tony09890

I started on Methotrexate three weeks ago, 10mgs for the first week, 15mgs the second and 20mgs last night.   The first 10mgs made the pain worse, the second worse still and last nights 20mgs dose worse again, I'm now at the point where I cannot use my hands at all.   I rang the Rheumatologist's rooms earlier today but unfortunately he's on holidays so I'm stuck with this pain and not being able to use my hands until such time as he comes back.   Clearly I'm one of those this Methotrexate doesn't work on, from what I've read on Methotrexate I think that may be a blessing.  So, more guessing games from the Rheumatologist coming up, Is there a medication to protect us from the medical fraternity?

0 likes, 17 replies

17 Replies

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  • Guest
    Guest tony09890

    Posted

    sorry to hear that tony. i am typying with one hand because of the same thing. i cannot move my left arm. i incresed my mtx last week to 15 mg. i know it hurts like hell. i am going to see if my doc will give me a cortisone shot today. hope so, i can't take this pain. hope you have some pain pills. my doc gives me an emergency pack of predisone for when i can't get to him like on weekends. maybe you can talk to the doc and he will do the same for you. it won't help this time but maybe next time. 
  • tony09890
    tony09890

    Posted

    I' already on Prednisone, doesn't help at all.
  • nathan72763
    nathan72763 tony09890

    Posted

    I was looking back at my rhumatoligists notes and he said I am positve for R/f esr 140 and ccp. Have you been tested for ccp Tony? He said I had the most aggressive and corrosive ra condition.

    i was in agony in my hands and wrists I also had pain everywhere. That was nearly 15 years ago are you in UK? 

  • loulou282
    loulou282 tony09890

    Posted

    hello tony

    in my experience it will take much more than 2 or 3 weeks, for me to see any benifit from thius "wonder" drug, it took around 6 months and still im on 25ml and im still flaring up so to a point i do agree with you but i would persevere abit longer, its been a year now and im still no better off although the swelling is much less but the pain is still severe sometimes. it can take up to 4 years to get it managed but unfortunatly that is just the nature of the disease. Dont disregard how effective mtx is,it may be toxic but there is things that are in place to combat that, i.e blood tests. I belong to a facebook support group on R/A and we talk all the time about other peoples experience, some people on there been on 20 odd years!!!!. I hope you will begin to feel better soon although once again due to the nature of the disease you may have a long journey ahead, sounds like your just beginning it. hope i have been of some help. 

  • lrevenden
    lrevenden tony09890

    Posted

    I've read before that mtx can make nerve pain worse so even when/if it's helping you it can aggregate damage already caused by your RA. It'll be worth discussing this with your rheumy and GP as they could prescribe something to help. I'm currently taking lyrica/pregabalin to help nerve pain
  • tony09890
    tony09890

    Posted

    No, I'm in Oz.   What is ccp?   I won't be embarking on any long journeys, life is to be enjoyed, once the enjoyment is gone so am I!
  • tony09890
    tony09890

    Posted

    That's one of the things that confuses me about the Rheumatologist's diagnosis - I don't have swelling or redness anywhere, just pain in my wrists, forearms, elbows, upper arms and neck, there are no joints in the forearms or upper arms
  • lyn1951
    lyn1951 tony09890

    Posted

    My rheumotologist told me that MTX is the gold standard, for intractable imflammtory type arthritis. I too get what I call a bounce from MTX, for 24hours or so my sore hands and wrists can feel worse, then it starts to kick in, and i do feel better.

    Have they tried you on Arava or Leflunomide, 20mg worked for me, but nearly did me in with extreme blood pressure. (apparently a rare reaction).

    I'm on 10mg of leflunomide which I seem to tolerate, but it does cause me to have very loose bowel movement in the morning.

    In Australia from my understanding they have to give you a number of the standard treatments, before the govenment will fund you for biologicals, and even then some of them can't be used for ex cancer patients, or if you have a positive TB test. I have had cancer and I also have a positive TB test, so I have been ruled out for bilogicals.

  • tony09890
    tony09890

    Posted

    Of all the meds Methotrexate appears to be the safest, despite the long list of rather concerning side effects.   My Rheumatologist returned my call yesterday and advised me to cease the Methotrexate it was causing side effects and up my Prednisolone dose.   I see him next week so I'll wait till I discuss it with him before I stop the Methotrexate, not keen on Methotrexate but even less keen on the alternatives.   I've upped the Prednisolone but haven't seen any improvement so far.   At 64 I'm not looking forward to spending the rest of my life as a cripple, unable to do anything.   The light at the end of the tunnel says RA sufferers lose about 10-15 years from their lifespan!   Looking forward to that!
  • lyn1951
    lyn1951 tony09890

    Posted

    Tony - you are not going to believe what I found on the internet.

    Beer helps RA.

    Type in Arthritis and Beer, and there are some articles there.

    My son who also has had achy joints has been claiming for some time that a beer helps.

    Yeahhhh right I said, drink enough and you woudn't feel anything as a result of. NONONONONO he says to me, it actually helps, I have less pain for a few days.

    Now here I am trying beer, and guess what, less pain in shoulders, and I don't even like beer, will keep experimenting I think as long as the pain stays away.

    I'm still not sure, I'm not nuts, so to speak, but I have even got to the stage of finding a source of weed to see if that helps.

    Never thought about breaking the law previously but the discomfort is driving me too it.

    • Guest
      Guest lyn1951

      Posted

      Feel the same way Lyn, something has to help and when you get to that point you really don't care what it is!!
    • gemma83759
      gemma83759 lyn1951

      Posted

      I could do with some of that too!! I've just endured the worst Xmas and new year. This flare up is neverending, this is 8 weeks of unrelenting pain, I really can't take anymore. I can't see any light at the end of the tunnel only black. How long do ur flare ups last guys?
    • lyn1951
      lyn1951 gemma83759

      Posted

      Gemma - I feel for you and with you, know exactly how you feel.

      Minor flare for me as well, too much junk food, too much drink etc.

      This morning I went back to what I call my own diet routine, would not recommend this to anyone else, but it works for me.

      NO WHEAT, at all you need to look at labels, rice instead, boil up a pot of rice, then think of dozens of ways to make it palatable, eat rice cakes, or polysytrene biscuits, as my husband calls them, with filling, oily fish is my fav.

      Husband hates it, so I have to still cook for him.

      NO MILK, rice milk instead.

      WHEAT seems to trigger my flares, I can almost tell you if I have eaten something with hidden wheat, due to the pain when I wake up the following morning.

      Have told specialist about this, and she said it should not be affecting me, tested me for cealiac, negative.

      Takes about 3 days of this routine for my flare to settle some, my theory is if it works why not, Dr does not object as long as I take multi vitamins as well.

    • Guest
      Guest gemma83759

      Posted

      Gemma, mine usually last about a week, but the pains never leave, they just subside to tolerable. I have had constant pain from about July on. It feels like my shoulders are sprained and I have sharp pains in them thru out the day. Just went thru a major flare and got a cortisone shot and holy cow the swelling was going down by nightfall. It is still really tender and the other hand is acting up. It's a bitch because I can't really use my arms like I used to or they will really hurt. Changed meds and now upping the MTX. We will see if that works. I give it 3 months to take effect then tell the doc 
    • gemma83759
      gemma83759 lyn1951

      Posted

      Thanks for that Lyn. I've recently started keeping a food diary again to see if there's a pattern at all. But since I'm in so much pain this last eight weeks I haven't really had an appetite and haven't been eating a great deal anyway so naturally I've lost a stone and a half in weight. I really feel at the end of my tether I really can't take anymore. Got app at the biologic clinic on the 12 th. Starting a biologic med. I don't even want to start it cos of what these meds do to your body but I've no choice since I can't go on like this. Keep well Lyn and thanx for your reply. G.
    • gemma83759
      gemma83759 Guest

      Posted

      Thanks river. I've never had a flare up like this one, never do severe and unrelenting. The pain is unbearable in my shoulders, Achilles heel, balls of my feet, wrists and hands but shoulders are by far the worse, I can't move to do anything without a severe pain that takes my breath away. I had a cortisone injection at the ra clinic a couple of weeks ago and usually they work wonders for me but not this time, it's quite common for the injection to not work as well the more you get them. Starting a biologic med soon so fingers X. Worrying about starting it as I always tried to stay away from them but I've no choice now. Thanks for your reply. Take care. G.
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