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If it's not one thing, it's another

Posted , 5 users are following.

FlipDover_Aust
FlipDover_Aust

I've been getting some great results from taking MXT to help me get my pred dose down since Dec last year.... Just got my latest batch of blood test results and my liver function test shows my liver is not doing so well...

"nothing to worry about yet" says the GP, "we'll do another test in a fortnight for comparison".

Great. Just great.

Just when I'm finally starting to feel well and able to resume living my life this crap happens!

So I'll wait and see what the next round of tests show - I see my rhuemy two days after the next blood test so he will be able to advise me on what happens next if there's no improvement.

Life is conspiring against me ever enjoying red wine again. GRRRR

 

0 likes, 20 replies

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  • linda17563
    linda17563 FlipDover_Aust

    Posted

    This is what happened to my sister...she was rung at home after the second test, and told to stop it immediately.  It took her three months for her liver readings to get back to somewhere like "normal".  Be careful, even if you feel better taking it...

    My Rheumy suggested it to me as a "sparing drug" but I`m rather frightened of taking it, after what happened to my sister.....good luck...

    • FlipDover_Aust
      FlipDover_Aust linda17563

      Posted

      I am taking it as a 'steroid sparer' and it's doing a stirling job! I've been able to reduce from 20mg (which wasn't working) to 5 1/2mg that IS working!

      I don't know what happens if I have to stop taking the MXT - will I have to increase my pred dose?

    • linda17563
      linda17563 FlipDover_Aust

      Posted

      Wish I could answer that, my sister has RA, so in a different situation, but I am due to go to my Rheumy, who once again will offer it to me...that is the question I will be asking. I`m sure Eileen or someone on some post has the answer....sorry I don`t.  It`s such a shame and frustrating when you were doing so wellrolleyes
    • Tastyron
      Tastyron linda17563

      Posted

      Just been to see my rhuemy today and was told that as it is taking me so long to reduce my Pred intake (25mg at beginning of Jan to 15mg as of last week), she wants to prescribe MTX. Personally I don't think reducing by 10mg in 4 months is particularly slow or am I wrong. I have told her that I would rather wait another month or two before I decide whether or not to go with it. She seems to be ok letting me control my tapering but in two visits she wanted to prescribe Alendonic Acid and now MTX. Surely 4 months is still early days. I was fairly happy with the way it is progressing but now I'm a bit confused.

      Ron.

    • Anhaga
      Anhaga Tastyron

      Posted

      Tastyron, stick to your guns.  It's your body, you know what is going to work for you.  Remember what has been said many times on this forum: It isn't slow if it works.  Also you know there's a lot that can be done to protect bones without resorting to another heavy duty medication with its slew of scary side effects, even if your doctors don't.
    • FlipDover_Aust
      FlipDover_Aust Tastyron

      Posted

      Hi Ron, I agree with Anhaga - stick to your guns! You are already reducing quite quickly. Why don't you take a copy of the DSNS method and tell your Rhuemy that you will follow it until you can't reduce any further?
  • mphooey
    mphooey FlipDover_Aust

    Posted

    Are you taking folic acid also? I now take 2 mg to counterract the mtx effect on the liver. Granted I haven't had a liver function test yet. I should ask for one next visit.
    • FlipDover_Aust
      FlipDover_Aust mphooey

      Posted

      I take 15mg of folic acid for three days after my MTX dose.  It was increased from 10mg early on as I wasn't feeling well after the weekly MTX dose.

      I am of the understanding that having LFT is very important right from the start to monitor your response to the MTX. I'd be on your Dr ASAP about it.

  • duke87801
    duke87801 FlipDover_Aust

    Posted

    ;My rumey put me on mxt after 16 months at 20mgs. Today is the third dose, no good results yet.

    she would try to reduce pred. and it was not working.

    • Anhaga
      Anhaga duke87801

      Posted

      Duke, how was the attempt to reduce from 20 mg handled?  Perhaps she recommended too big and/or fast a drop?
    • duke87801
      duke87801 Anhaga

      Posted

      2.5 at a time, she is very precise and booked for over a year
    • Anhaga
      Anhaga duke87801

      Posted

      Have you tried the dead slow and nearly stop method?  This method you would drop by 2.5 from 20 for one day, return to your old dose for six (or four) days, then the new dose for one day, the old dose for five (or three) and so on until you switch over and are taking the new dose more frequently and phasing out the old dose.  After a week or so at the new dose you drop again and do the same thing all over again.  No drop should be more than 10% so at 10 mg the drops should be no more than 1 mg, eventually at the lowest levels .5 mg, and always ready to stop, maybe go up slightly, if there is any hint at all that pmr is starting to flare.  Easiest way I've used to find this method is to google healthunlocked dead slow nearly stop.
    • FlipDover_Aust
      FlipDover_Aust duke87801

      Posted

      it sounds like you were a good candidate for MTX. Give it time - I've discovered that no treatment works fast when dealing with PMR.

      so you haven't been able to reduce below 20mg yet?

    • duke87801
      duke87801 Anhaga

      Posted

      thanks for the DSNS method. will try that next
  • Susanne_M_UK
    Susanne_M_UK FlipDover_Aust

    Posted

    Flip, that's bad news! But even if you have to give up alcohol for now, it won't be forever. I stopped drinking alcohol in November of last year, as I knew MTX was on the cards. Do I miss it? In a word, - yes sometimes! But one day in the future, I shall raise a glass of wine to you and my fellow sufferers.

    Funnily enough, I'm ok if I'm out at dinner, and you'd be amazed how many people try to persuade me to have "just one glass". It's when I've had a stressful day and a nice big glass of vino would just do the trick that's the hardest.

    Hope your ALT is not too high.

    • FlipDover_Aust
      FlipDover_Aust Susanne_M_UK

      Posted

      Hi suzanne! I haven't really been drinking since the whole PMR thing started, other than the odd night or two (which I thouroughly enjoyed!). 

      I do wonder what is 'too high' when talking about ALT!  

    • Susanne_M_UK
      Susanne_M_UK FlipDover_Aust

      Posted

      're ALT, I saw my gastroenterologist today and she showed me my ALT results on her computer. When it reached 30 last month, it had gone into the black, ie normal. But from reading online about it, what is considered normal varies from hospital to hospital and even country to country. And I suppose you also have to take into account individual body type etc.
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