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Prednisone “withdrawal”

Forums General Melanoma Community Prednisone “withdrawal”

  • Post
    mark1101
    Participant

      I have been taking Prednisone more or less constantly since April at doses varying from 0 – 80 mg daily.  The purpose of this was to mitigate a rash I was getting as a side effect of my ipi.  I tapered down to zero 9 nine days ago as I had a maintenance IV of ipi 7 days ago and the two drugs don't work well together.  I have had no rash (or any other sude effect) since this last dose of ipi and have not resumed Prednisone.  The day after my treatment I began suffering from no appetite at all and being unbelieveably tired all of the time.  My Onc indicates this i

      I have been taking Prednisone more or less constantly since April at doses varying from 0 – 80 mg daily.  The purpose of this was to mitigate a rash I was getting as a side effect of my ipi.  I tapered down to zero 9 nine days ago as I had a maintenance IV of ipi 7 days ago and the two drugs don't work well together.  I have had no rash (or any other sude effect) since this last dose of ipi and have not resumed Prednisone.  The day after my treatment I began suffering from no appetite at all and being unbelieveably tired all of the time.  My Onc indicates this is most likely a backlash from the Prednisone and will take some time to settle down.  Has any one els had this particular experience with Prednisone?  How long did it take for these effects to subside for you?

    Viewing 11 reply threads
    • Replies
        Tina D
        Participant

          I am still on 5 mg of pred, tapered from the initial 60mg after swollen pituitary from ipi. Hoping to taper completely. So, I cannot help you with this particular issue but would love for you to post and let us know how long it takes to feel better again. I do know that your own adrenals will take a little while to adjust to the fact that now they need to start producing cortisol again. I hope you get feeling better soon!

          Tina

          Tina D
          Participant

            I am still on 5 mg of pred, tapered from the initial 60mg after swollen pituitary from ipi. Hoping to taper completely. So, I cannot help you with this particular issue but would love for you to post and let us know how long it takes to feel better again. I do know that your own adrenals will take a little while to adjust to the fact that now they need to start producing cortisol again. I hope you get feeling better soon!

            Tina

            Tina D
            Participant

              I am still on 5 mg of pred, tapered from the initial 60mg after swollen pituitary from ipi. Hoping to taper completely. So, I cannot help you with this particular issue but would love for you to post and let us know how long it takes to feel better again. I do know that your own adrenals will take a little while to adjust to the fact that now they need to start producing cortisol again. I hope you get feeling better soon!

              Tina

              casagrayson
              Participant

                After being on prednisone for five months, I'm sure your body is reacting to the withdrawal.  I'm curious — how fast did you taper?  Your symptoms sound like adrenal insufficiency, in which case adding some hydrocortisone or prednisone will alleviate the fatigue.  I'm a Cushing's patient, and suffer from AI — I use Cortef because it is a shorter-acting drug and also because I can titrate down more easily since it is not as strong as prednisone.

                If you continue having symptoms, I would suggest talking to your oncologist and seeing if you could be prescribe hydrocortisone in 20mg and 5mg tablets.  (20mg is equivalent to 5mg of prednisone).  Take the 20 daily for several days, then titrate down to 10mg.  Stay at that dosage a few days, and then down to 5mg.  If your symptoms return, reduce the titration to increments of 2.5mg.  

                Good luck!!

                casagrayson
                Participant

                  After being on prednisone for five months, I'm sure your body is reacting to the withdrawal.  I'm curious — how fast did you taper?  Your symptoms sound like adrenal insufficiency, in which case adding some hydrocortisone or prednisone will alleviate the fatigue.  I'm a Cushing's patient, and suffer from AI — I use Cortef because it is a shorter-acting drug and also because I can titrate down more easily since it is not as strong as prednisone.

                  If you continue having symptoms, I would suggest talking to your oncologist and seeing if you could be prescribe hydrocortisone in 20mg and 5mg tablets.  (20mg is equivalent to 5mg of prednisone).  Take the 20 daily for several days, then titrate down to 10mg.  Stay at that dosage a few days, and then down to 5mg.  If your symptoms return, reduce the titration to increments of 2.5mg.  

                  Good luck!!

                  casagrayson
                  Participant

                    After being on prednisone for five months, I'm sure your body is reacting to the withdrawal.  I'm curious — how fast did you taper?  Your symptoms sound like adrenal insufficiency, in which case adding some hydrocortisone or prednisone will alleviate the fatigue.  I'm a Cushing's patient, and suffer from AI — I use Cortef because it is a shorter-acting drug and also because I can titrate down more easily since it is not as strong as prednisone.

                    If you continue having symptoms, I would suggest talking to your oncologist and seeing if you could be prescribe hydrocortisone in 20mg and 5mg tablets.  (20mg is equivalent to 5mg of prednisone).  Take the 20 daily for several days, then titrate down to 10mg.  Stay at that dosage a few days, and then down to 5mg.  If your symptoms return, reduce the titration to increments of 2.5mg.  

                    Good luck!!

                    Cindy VT
                    Participant

                      I have been on prednisone so many times.  For me when I start It ramps me up like the energizer bunny, its hard to sleep and you just keep going.  When I taper down, near the end, I get really upset and with that I take Lorazepam. 

                      Its a nasty drug but it really works well for rashes and hives and asthma.

                      Cindy VT
                      Participant

                        I have been on prednisone so many times.  For me when I start It ramps me up like the energizer bunny, its hard to sleep and you just keep going.  When I taper down, near the end, I get really upset and with that I take Lorazepam. 

                        Its a nasty drug but it really works well for rashes and hives and asthma.

                        Cindy VT
                        Participant

                          I have been on prednisone so many times.  For me when I start It ramps me up like the energizer bunny, its hard to sleep and you just keep going.  When I taper down, near the end, I get really upset and with that I take Lorazepam. 

                          Its a nasty drug but it really works well for rashes and hives and asthma.

                          NYKaren
                          Participant
                            Hi Mark,
                            The same thing happened to me. I was so tired, I couldn’t walk up one single step. It was deemed adrenal insufficiency. Apparently, a much shorter course of dexamethasone was prescribed instead of the prednisone and it eventually did the trick.
                            I’m going to have to do the taper too, not looking forward to it.
                            All the best,
                            Karen
                            NYKaren
                            Participant
                              Forgot to add that it was from the Ipi.
                              Hope this helps.
                              NYKaren
                              Participant
                                Hi Mark,

                                I’m so glad you’re feeling better.

                                I’ve been taking dexamethasone 4 mg. 3x/day since I was Gamma-Knifed in April for brain mets, which is approximately 80 mg./day of prednisone. My next dr. appointment is 9/11and I believe she’ll start weaning me then. I hope to go back to work in about two weeks.

                                The thought of going back to work now is scary, I still get mixed up a lot and it’s still hard to remember stuff. Last night I got so angry with a family member, completely my fault. I know these meds are useful, for me they’re very hard to take. I know it might be months before I’m allowed to drive again, simply can’t take the risk of a seizure.

                                Take care, Mark.
                                Karen

                                NYKaren
                                Participant
                                  Hi Mark,
                                  The same thing happened to me. I was so tired, I couldn’t walk up one single step. It was deemed adrenal insufficiency. Apparently, a much shorter course of dexamethasone was prescribed instead of the prednisone and it eventually did the trick.
                                  I’m going to have to do the taper too, not looking forward to it.
                                  All the best,
                                  Karen
                                  NYKaren
                                  Participant
                                    Hi Mark,
                                    The same thing happened to me. I was so tired, I couldn’t walk up one single step. It was deemed adrenal insufficiency. Apparently, a much shorter course of dexamethasone was prescribed instead of the prednisone and it eventually did the trick.
                                    I’m going to have to do the taper too, not looking forward to it.
                                    All the best,
                                    Karen
                                    NYKaren
                                    Participant
                                      Forgot to add that it was from the Ipi.
                                      Hope this helps.
                                      NYKaren
                                      Participant
                                        Forgot to add that it was from the Ipi.
                                        Hope this helps.
                                        mark1101
                                        Participant

                                          Thanks for your reply Karen. Are you tapering fronm Prednisone or from the alternative?  The trck seems to be in the varying tolerance each our body chemistries has for the steroid in addition to how long we took it and at what dose.  I am finally returning to normal appetite and almost back to regular energ levels on day 11 following last dose of prednisone tapering from 60mg down to 0 in 5 mg increments.  Hope your tapering works better for you than it did for me.  Glad you are getting off it…means the condition you were taking it for is improving.

                                          mark1101
                                          Participant

                                            Thanks for your reply Karen. Are you tapering fronm Prednisone or from the alternative?  The trck seems to be in the varying tolerance each our body chemistries has for the steroid in addition to how long we took it and at what dose.  I am finally returning to normal appetite and almost back to regular energ levels on day 11 following last dose of prednisone tapering from 60mg down to 0 in 5 mg increments.  Hope your tapering works better for you than it did for me.  Glad you are getting off it…means the condition you were taking it for is improving.

                                            mark1101
                                            Participant

                                              Thanks for your reply Karen. Are you tapering fronm Prednisone or from the alternative?  The trck seems to be in the varying tolerance each our body chemistries has for the steroid in addition to how long we took it and at what dose.  I am finally returning to normal appetite and almost back to regular energ levels on day 11 following last dose of prednisone tapering from 60mg down to 0 in 5 mg increments.  Hope your tapering works better for you than it did for me.  Glad you are getting off it…means the condition you were taking it for is improving.

                                              NYKaren
                                              Participant
                                                Hi Mark,

                                                I’m so glad you’re feeling better.

                                                I’ve been taking dexamethasone 4 mg. 3x/day since I was Gamma-Knifed in April for brain mets, which is approximately 80 mg./day of prednisone. My next dr. appointment is 9/11and I believe she’ll start weaning me then. I hope to go back to work in about two weeks.

                                                The thought of going back to work now is scary, I still get mixed up a lot and it’s still hard to remember stuff. Last night I got so angry with a family member, completely my fault. I know these meds are useful, for me they’re very hard to take. I know it might be months before I’m allowed to drive again, simply can’t take the risk of a seizure.

                                                Take care, Mark.
                                                Karen

                                                NYKaren
                                                Participant
                                                  Hi Mark,

                                                  I’m so glad you’re feeling better.

                                                  I’ve been taking dexamethasone 4 mg. 3x/day since I was Gamma-Knifed in April for brain mets, which is approximately 80 mg./day of prednisone. My next dr. appointment is 9/11and I believe she’ll start weaning me then. I hope to go back to work in about two weeks.

                                                  The thought of going back to work now is scary, I still get mixed up a lot and it’s still hard to remember stuff. Last night I got so angry with a family member, completely my fault. I know these meds are useful, for me they’re very hard to take. I know it might be months before I’m allowed to drive again, simply can’t take the risk of a seizure.

                                                  Take care, Mark.
                                                  Karen

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