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Finishing Decadron Taper–Help, please
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Finishing Decadron Taper–Help, please

› Forums › General Melanoma Community › Finishing Decadron Taper–Help, please

  • Post
    • November 26, 2013 at 3:50 pm
    NYKaren
    Participant

      Hi,

      I am finishing a slow Decadron taper…was on 4 mg, went up to 8 mg. after MRI revealed new brain mets, .  After Gamma Knife, 3 weeks ago,  been tapering and now at 1 mg.  Supposed to go to 1/2 mg. for 5-7 days.

      After work, I just go home, read in bed and go to sleep between 9-10:00.  Snooze alarm=best friend.

      I've had leg pain throughout, but not like this.  Last couple of days, bi-lateral, tremendous pain from hip to toe.  Also, severe GERD, my fault for eating too late and not sleeping on enough pillows.

      I'm already taking pain meds…now taking it all the time and even waking up during the night to take it. 

      My question is:  If anyone has done a Steroid taper, will the leg pain stop when steroids stop?

      I am weak, but not as weak as I was 2 years ago when stopping pred (colitis caused by Ipi)…went onto hydrocort. because of adrenal insufficiency and really don't remember–I just know that one flight of stairs is too much for me. 

      Any help much appreciated.

      Karen

    Viewing 8 reply threads
    • Replies
        • November 26, 2013 at 4:52 pm
        awillett1991
        Participant

          Hey Karen – sorry you are having so much trouble! I have never been on Decdron but I do know it takes awhile for steroids to work their way out of your system. I have been on pred lots as you know. At one point, tapered from 5 mg to 0 in two weeks. Two weeks sleeping, aching and nauseous on the couch that is.  I definitely have less energy when I'm tapering down. Haven't had the leg pains. Are you getting enough fluid?

          Maybe the schedule is too fast? My Dr lets me set my own schedule now, I understand it is a very individual thing. Generally, when I feel good, I know I can step down again. 

          Stick with it! You are almost there!!

          Amy

          • November 26, 2013 at 4:52 pm
          awillett1991
          Participant

            Hey Karen – sorry you are having so much trouble! I have never been on Decdron but I do know it takes awhile for steroids to work their way out of your system. I have been on pred lots as you know. At one point, tapered from 5 mg to 0 in two weeks. Two weeks sleeping, aching and nauseous on the couch that is.  I definitely have less energy when I'm tapering down. Haven't had the leg pains. Are you getting enough fluid?

            Maybe the schedule is too fast? My Dr lets me set my own schedule now, I understand it is a very individual thing. Generally, when I feel good, I know I can step down again. 

            Stick with it! You are almost there!!

            Amy

            • November 26, 2013 at 4:52 pm
            awillett1991
            Participant

              Hey Karen – sorry you are having so much trouble! I have never been on Decdron but I do know it takes awhile for steroids to work their way out of your system. I have been on pred lots as you know. At one point, tapered from 5 mg to 0 in two weeks. Two weeks sleeping, aching and nauseous on the couch that is.  I definitely have less energy when I'm tapering down. Haven't had the leg pains. Are you getting enough fluid?

              Maybe the schedule is too fast? My Dr lets me set my own schedule now, I understand it is a very individual thing. Generally, when I feel good, I know I can step down again. 

              Stick with it! You are almost there!!

              Amy

              • November 26, 2013 at 11:20 pm
              Brendan
              Participant

                Hi Karen,

                I am sorry to hear about your trouble with the taper.  I have tapered off decadron three times (each time after SRS or crani).  I don't remember the exact details, but the taper was often too agressive and the dosage had to be adjusted.  I never had the leg pains.  I had headaches, but never enough for consistent pain meds.

                What did your docs say?

                Good luck,

                Brendan

                 

                 

                • November 26, 2013 at 11:20 pm
                Brendan
                Participant

                  Hi Karen,

                  I am sorry to hear about your trouble with the taper.  I have tapered off decadron three times (each time after SRS or crani).  I don't remember the exact details, but the taper was often too agressive and the dosage had to be adjusted.  I never had the leg pains.  I had headaches, but never enough for consistent pain meds.

                  What did your docs say?

                  Good luck,

                  Brendan

                   

                   

                  • November 26, 2013 at 11:20 pm
                  Brendan
                  Participant

                    Hi Karen,

                    I am sorry to hear about your trouble with the taper.  I have tapered off decadron three times (each time after SRS or crani).  I don't remember the exact details, but the taper was often too agressive and the dosage had to be adjusted.  I never had the leg pains.  I had headaches, but never enough for consistent pain meds.

                    What did your docs say?

                    Good luck,

                    Brendan

                     

                     

                    • December 5, 2013 at 2:42 am
                    Janet Lee
                    Participant

                      Hi Karen,

                      My husband, Don, had a lot of trouble tapering off of decadron several times. What he finally ended up doing was an extremely long and slow taper, like dropping 1/2 mg every 10 days or so. I don't remember him having leg pains, though. Hope this helps. And I hope you can find the right approach and feel better.

                      Janet

                      • December 5, 2013 at 2:42 am
                      Janet Lee
                      Participant

                        Hi Karen,

                        My husband, Don, had a lot of trouble tapering off of decadron several times. What he finally ended up doing was an extremely long and slow taper, like dropping 1/2 mg every 10 days or so. I don't remember him having leg pains, though. Hope this helps. And I hope you can find the right approach and feel better.

                        Janet

                        • December 5, 2013 at 2:42 am
                        Janet Lee
                        Participant

                          Hi Karen,

                          My husband, Don, had a lot of trouble tapering off of decadron several times. What he finally ended up doing was an extremely long and slow taper, like dropping 1/2 mg every 10 days or so. I don't remember him having leg pains, though. Hope this helps. And I hope you can find the right approach and feel better.

                          Janet

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