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Can't take Methotrexate anymore

Posted , 9 users are following.

DebbieHurts
DebbieHurts

I tried to take this drug for about three months, even though it made me very weak and sick.  I thought I did notice that I didn't have as much inflammation in my ankles especially, which were bothering me so badly before.  Meanwhile the dr wanted me to reduce the Pred.  I was on 18 after a flare up and have come down to 17.  I know, big deal.  Anyway I called the dr about my weakness and he said to quit the MTX for now.  I hope the weakness goes away soon.  I am out of breath just doing some small household chore, and a day of going to town for an hour or so wipes me out for two days.  Anybody have experience of quitting MTX?  I wish I could take 20 prednisone and feel better, but it is too much, the dr says.  He says I'm making him tear out his hair.

 

1 like, 14 replies

14 Replies

  • maid_mariane
    maid_mariane DebbieHurts

    Posted

    Why is 20 mg prednisone to much? I started on 20 and in my last week of reduction to 17.5mg.
  • Nanduff
    Nanduff DebbieHurts

    Posted

    I also took MTX. It made me so sick and weak also. I stopped after 2 weeks. That was 3 yrs ago. Unfortunately I had a flare in August  I started on 15mg for 3 days..still had pain so I upped it to 20mg.  Felt great. I'm tapering very slow.  Went to 17 after 3 weeks. Then by 1mg per month.  Other than what I now call 'pred head'...foggy, a little depressed..I'm feeling good.   I have been to 2 rheumatologists before I found my current dr.   The other Drs kept saying 'we have to get you off this pred'.  They clearly do not get it!  This dr was fine with the 20mg and understands that the only thing that helps PMR is pred.  Do not let your dr make you reduce too fast!  On this discussion you can see what Eileen calls the 'dead-slow' method.  I learned..as well as others on this discussion ..that we the patients have to do what we know is right.  If this dr is giving you a hard time with the amt of pred..you can show him the posts on this site (I do a screen shot of particular discussions that I want to share with my dr...and my kids!).   Or you may have to find a dr that will listen.  

    Hope this helps..feel bettersmile

     

    • Nanduff
      Nanduff

      Posted

      FYI. In the above post my smiley face I entered is not the one that is showing ?  Looks a little scary...lol

       

    • jan21306
      jan21306 Nanduff

      Posted

      hi Nanduff,   I would love to be able to show my doc some of the discussions here.  How do you do a screen shot ?   I tried to print one out but it didnt work.  I am not very good at IT !  Thanks 😄
    • Nanduff
      Nanduff jan21306

      Posted

      Hi Jan

      do you have an iPhone or iPad ?  If so, you hold the off button on the side of the devise and the control button on the top at the same time.  Or on a PC you can highlight the text then while your curser is over the highlighted area hit Control P   This should bring up the print box.  Sorry if this isn't very clear..I'm better at showing!

    • jan21306
      jan21306 Nanduff

      Posted

      thanks Nanduff,I will give it a go.   I may have to come back to you on this, as I said, I am hopeless at these things !
  • DebbieHurts
    DebbieHurts

    Posted

    Thank you for your replies.  I guess I do need to find another doctor, though in other ways I like this fellow.  I find myself encouraged here to take more pred and feel good for a change and then discouraged by the dr who wants me to get off it as soon as I can.  Meanwhile when I take enough I feel better and can do more and yet I want to quit it so as to lose weight and not be afraid of internal problmes.  Push/Pull!
    • gillian_25383
      gillian_25383 DebbieHurts

      Posted

      We're you on tablets or injections.I had to come off tablets cos of GI bad side effects.Have now done two injections and fingers crossed no side effects.
  • Crystalcave
    Crystalcave DebbieHurts

    Posted

    I have been on 9 mg of pred for a while until I had hip surgery in August.  Had a bad flare up after surgery and had to put my pred up to 20 mg before I got the pain under control.  Fortunately I am coming back down again now.  I say if you need to up your pred to control it then you should.  My Rheumy isn't very sympathetic either, always wanting me to reduce more quickly but he's not the one who can't function without the meds.  

    Good luck

    Sue

  • Silver49
    Silver49 DebbieHurts

    Posted

    I think it is rather unprofessional of your doctor saying you are making him tear his hair out. Perhaps you could ask him for the said hair and it can be made in to a wig!
  • DebbieHurts
    DebbieHurts

    Posted

    I've been taking the tablets and haven't had too much trouble with them.  The MTX has stopped my hair from growing in, so it is much thinner.  I didn't notice the pred. doing but just a bit in front before.  I know what you mean about him saying I'm making his hair fall out.  He is mostly bald himself, too!  I took 20 mg this morning and am going to see if that amount helps the pain around my hips and up and down my legs and arms if I keep at 20 for a few days.  How long do you think it would take to show if the pain is PMR?  Trouble is I have fibromyalgia, too.
    • Silver49
      Silver49 DebbieHurts

      Posted

      No wonder he is mostly bald if that's what he says to all his patients! I am only on prednisolone so can't advise but someone more knowledgeable will. I am so sorry to hear that you are having such a difficult time. I hope you have some easing soon.
  • Judyg
    Judyg DebbieHurts

    Posted

    Hi Debbie, I have a dilemma, I have GCA and rheumatologist nurses wish me to start methotrexate, which I am reluctant to do.  I'm on 42.5mg of prednisone which comes with its own set of problems too.  

    Obviously you have little succes with the drug, any suggestions?

    • gillian_25383
      gillian_25383 Judyg

      Posted

      Hi Judyg,I was fine at first on methotrexate but when I got up to 25mg /week side effects of tablets unbearable.They switched me to the same dose by injection and so far no side effects as it bypasses the gut.I had to have counselling by rheumatology nurse before methotrexate so you get full info before making decision.Whatever you decide good luck
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