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One more week at 1 mg pred and then down to 0

Posted , 7 users are following.

marilyn79703
marilyn79703

Saw rhummy today and she said I should still take methotrexate for a few more months but off the pred. Took bloodwork to see how that is but seems like they think I am done woth pmr. Had it since March off 2014. Had no flares, so all looks good. But I am nervous about the whole thing. I go back in 3 months unless there is a flare then must call them right away. Also watch for pain in head or neck or jaw. If that happens I am off to a new medical issue that i do not want. Fingures crossed that all is well and will keep you informed.

3 likes, 7 replies

7 Replies

  • Dave-California
    Dave-California marilyn79703

    Posted

    Hi Marilyn,

    Glad to hear that you are close to remission and not having any flares or other issues. My rheumatologist also put me on MTX with the prednisone after my first major flare - I am now down to 5mg pred and still taking my once a week 25mg MTX and after a small flare at 4mg causing me to raise back to 5mg, I seem to be stabilizing.

    I am very interested to hear that you are tapered almost to zero mg but still required to continue with MTX for a while. Did you rheumatologist explain why MTX is to continue ? Also did your rhematologist reduce your MTX during your taper with pred or did you stay at the same weekly dose for the entire time ?

    As I am getting 'tapered' and it seems to be working with only mild background shoulder and hand pain, I am really wondering how others deal with the MTX aspect of their medication to give me some guidance with my 'future' hopeful taper to zero and full PMR remission.

    Thanks - Dave

    • LayneTX
      LayneTX Dave-California

      Posted

      I'm so excited for you and to hear this Marilyn! 

      Do you not have any pains at all now? No muscle, no tendon? No joint?

      im just trying to figure out what to expect, or what possibilities are. 

      Like Dave, I'm curious about other meds. I just got out on Hydrochloroquine verses the MTX.  Since my liver levels elevated she said no to MTX. 

      Im just so happy for you and don't be scared...it puts stress in your system.  My new motto I'm TRYING to keep is "be happiness", and list all the things I'm thankful for, though it's ok to admit being scared, as long as we spend more time not being scared. I'm scared too. But I'm gitty about your news. Hugs to you! 

    • marilyn79703
      marilyn79703 Dave-California

      Posted

      Methotrexate also controls inflamation says my rhumy. Have to stay on that for a few more months. Of course if I get  flare I will have to back to pred. I have some stiffness in legs and shoulders but she said could be just regular arthriris. I take 6 mathotrexate once a week. She did not raise it at this time. Will let all know how this works out.
    • Dave-California
      Dave-California marilyn79703

      Posted

      Thanks for keeping in touch regarding your future "happenings" with the disappearance of Pred and MTX - like others I wish you a pleasant and steady taper to zero and beyond - and then a permanant remission so you don't have to talk to us any more about your PMR miseries !!

      Dave

  • pauline36422
    pauline36422 marilyn79703

    Posted

    congrats marylin   i just cannot  stay at 1mg  been there  twice  but had to up to 2mg with  paracetamol at morning and    evening.    but at least its ok at 2.  so given a couple of weeks i will try again   i go down   quater   per drop. and it takes  about  2 month  to drop a whole mg    but well done you  hope you   succseed xxx
    • marilyn79703
      marilyn79703 pauline36422

      Posted

      Thank you will keep information posted as it happens. Good luck to all of us with this miserable disease.
  • pat38625
    pat38625 marilyn79703

    Posted

    Good luck Marilyn, I sincerely hope it works out for you.  Keep us all informed.  Regards Pat
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