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Prednisone
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Prednisone

› Forums › General Melanoma Community › Prednisone

  • Post
    • December 19, 2015 at 11:34 pm
    knittingirl
    Participant

      Hello,

      I was following a yervoy/opdivo infusion since October but after the third infusion my liver enzyms went up, I developped hypothyroidism and finally diarrhea ( 6-7 stools a day). I have started prednisone last Tuesday ( 40 mg in the morning and 20 mg at night). While I am under the medecine it controls pretty well my diarrhea but around 2 a.m I wake up and go 2 to 3 times to restrooms until 5 a.m and same at the end of the afternoon.I am very tired because I stay long time awake at night.

      I know that everyone is different but how long should I wait before to see any improvement regarding the diarrhea ? I understand also the prednisone will have to be tapered before I stop to take it, how long should it take ( weeks ? days ?)? Any advice for having better night sleep  ( I prefer natural remedies )?

      I won't be able to get the fourth infusion, but the doctor told that if my diarrhea gets better quickly, we may consider only Opdivo as Yervoy seems to be the most toxic effects of the combo.

      The good news is the tumor is not detectable anymore under my skin and neither with the portable ultrasound at the doctor's office. I wait impatiently for the CT scan.

      Best

    Viewing 8 reply threads
    • Replies
        • December 20, 2015 at 12:48 am
        AshleyS
        Participant

          I had almost the exact same thing occur. I did my third infusion and had gastro issues. I was taken off of the combo and put on prednisone.  It took quite a while to taper off – longer than I would've thought. In addition, I don't have anything to help you with the sleeping issues. I literally slept an hour a night. My son was only three months old at the time so on one hand it was good because I could get up with  him all the time. On the other hand I felt insane. 

          Here's the good news:  after I completed the combo and Opdivo, I am now NED. So just  try to stay positive and keep on keeping on! 

          Ashley

          • December 20, 2015 at 12:48 am
          AshleyS
          Participant

            I had almost the exact same thing occur. I did my third infusion and had gastro issues. I was taken off of the combo and put on prednisone.  It took quite a while to taper off – longer than I would've thought. In addition, I don't have anything to help you with the sleeping issues. I literally slept an hour a night. My son was only three months old at the time so on one hand it was good because I could get up with  him all the time. On the other hand I felt insane. 

            Here's the good news:  after I completed the combo and Opdivo, I am now NED. So just  try to stay positive and keep on keeping on! 

            Ashley

              • December 23, 2015 at 1:33 pm
              chrisholder
              Participant

                In early summer of this year I started ipi/nivo but only lasted for two infusions before being hospitalized w/ auto immune hepatitis, thyroid disease (knocked it out) and other BP and potential pneumonitis issues.  Not gastro, though.  Had prednisone at 160mg for several weeks before the taper off & finally went off P. about 5-6 weeks later.  Recovering from side effects kept me off actual cancer drugs until Sept when I started Pembrolizumab & am stil on it (I have mucosal m. in the sinus).  Prednisone is a necessary drug to reverse the side effect damage, but you have to wait for the full taper down before you can start another imm. treatment.  Good luck!   Chris

                • December 23, 2015 at 1:33 pm
                chrisholder
                Participant

                  In early summer of this year I started ipi/nivo but only lasted for two infusions before being hospitalized w/ auto immune hepatitis, thyroid disease (knocked it out) and other BP and potential pneumonitis issues.  Not gastro, though.  Had prednisone at 160mg for several weeks before the taper off & finally went off P. about 5-6 weeks later.  Recovering from side effects kept me off actual cancer drugs until Sept when I started Pembrolizumab & am stil on it (I have mucosal m. in the sinus).  Prednisone is a necessary drug to reverse the side effect damage, but you have to wait for the full taper down before you can start another imm. treatment.  Good luck!   Chris

                  • December 23, 2015 at 1:33 pm
                  chrisholder
                  Participant

                    In early summer of this year I started ipi/nivo but only lasted for two infusions before being hospitalized w/ auto immune hepatitis, thyroid disease (knocked it out) and other BP and potential pneumonitis issues.  Not gastro, though.  Had prednisone at 160mg for several weeks before the taper off & finally went off P. about 5-6 weeks later.  Recovering from side effects kept me off actual cancer drugs until Sept when I started Pembrolizumab & am stil on it (I have mucosal m. in the sinus).  Prednisone is a necessary drug to reverse the side effect damage, but you have to wait for the full taper down before you can start another imm. treatment.  Good luck!   Chris

                    • January 9, 2016 at 1:38 am
                    sayres
                    Participant

                      I was on the ippi/nivo combo and had to go on prednisone 40mg morning and 40mg evening. I had liver enzyme issues, dermatitis, colitis and nausea. I was extremely dehydrated and therefore when I went for my 4th infusion ended up with 2 bags of fluid and a bag of solumedrol. Imodium stopped the diarrhea along with the prednisone. It took a couple weeks but my energy slowly picked up every day. It took about 6 weeks to get off the prednisone completely. I felt pretty good at that point. Good luck to you and keep on keeping on!

                      • January 9, 2016 at 1:38 am
                      sayres
                      Participant

                        I was on the ippi/nivo combo and had to go on prednisone 40mg morning and 40mg evening. I had liver enzyme issues, dermatitis, colitis and nausea. I was extremely dehydrated and therefore when I went for my 4th infusion ended up with 2 bags of fluid and a bag of solumedrol. Imodium stopped the diarrhea along with the prednisone. It took a couple weeks but my energy slowly picked up every day. It took about 6 weeks to get off the prednisone completely. I felt pretty good at that point. Good luck to you and keep on keeping on!

                        • January 9, 2016 at 1:38 am
                        sayres
                        Participant

                          I was on the ippi/nivo combo and had to go on prednisone 40mg morning and 40mg evening. I had liver enzyme issues, dermatitis, colitis and nausea. I was extremely dehydrated and therefore when I went for my 4th infusion ended up with 2 bags of fluid and a bag of solumedrol. Imodium stopped the diarrhea along with the prednisone. It took a couple weeks but my energy slowly picked up every day. It took about 6 weeks to get off the prednisone completely. I felt pretty good at that point. Good luck to you and keep on keeping on!

                        • December 20, 2015 at 12:48 am
                        AshleyS
                        Participant

                          I had almost the exact same thing occur. I did my third infusion and had gastro issues. I was taken off of the combo and put on prednisone.  It took quite a while to taper off – longer than I would've thought. In addition, I don't have anything to help you with the sleeping issues. I literally slept an hour a night. My son was only three months old at the time so on one hand it was good because I could get up with  him all the time. On the other hand I felt insane. 

                          Here's the good news:  after I completed the combo and Opdivo, I am now NED. So just  try to stay positive and keep on keeping on! 

                          Ashley

                          • December 20, 2015 at 7:09 pm
                          _Paul_
                          Participant

                            I had some sleeping issues too when I was on the initial high dose prednisone because of my hypophysitis from ipi. I found that taking Benadryl just before going to sleep helped me. I would take two caps. But then I would feel groggy in the morning for an hour or so but that seemed like an ok trade-off for a better night's sleep.

                            – Paul

                            • December 20, 2015 at 7:09 pm
                            _Paul_
                            Participant

                              I had some sleeping issues too when I was on the initial high dose prednisone because of my hypophysitis from ipi. I found that taking Benadryl just before going to sleep helped me. I would take two caps. But then I would feel groggy in the morning for an hour or so but that seemed like an ok trade-off for a better night's sleep.

                              – Paul

                              • December 20, 2015 at 7:09 pm
                              _Paul_
                              Participant

                                I had some sleeping issues too when I was on the initial high dose prednisone because of my hypophysitis from ipi. I found that taking Benadryl just before going to sleep helped me. I would take two caps. But then I would feel groggy in the morning for an hour or so but that seemed like an ok trade-off for a better night's sleep.

                                – Paul

                                • December 21, 2015 at 4:10 pm
                                Mat
                                Participant

                                  You may need a higher dosage until the diarrhea is under control.  I developed moderate colitis while on ipi.  I think I was up to ~160mg (which was the max for my weight) at one point.  The taper takes a number of weeks.  I don't recall exactly, but maybe it was 6-8 weeks?

                                    • December 22, 2015 at 2:11 am
                                    Bubbles
                                    Participant

                                      Sorry for the intrusion to the post….(The only thing I have to offer regarding prednisone is rather inconsequential….when I had to have mega doses post brain met zappage…I was hoping for all the energy to clean the house and do all this amazing stuff with one hand tied behind my back….and all I felt was completely exhausted….like my legs weighed 2 zillion pounds…EACH!!! But….it wore off rather quickly when I was allowed to come off the meds.)….but….have to ask:  Mat…how do you be????  love, c

                                      • December 22, 2015 at 5:12 pm
                                      Mat
                                      Participant

                                        Thanks Celeste.  Long story for me.  I pursued TIL at MDA, but alas my cells didn't grow.  I'm presently stable (hopefully) and am looking at other trials.  I see Dr. Wolchok in January and also made an appt with your Dr. Weber.  Happy holidays!

                                        • December 22, 2015 at 5:12 pm
                                        Mat
                                        Participant

                                          Thanks Celeste.  Long story for me.  I pursued TIL at MDA, but alas my cells didn't grow.  I'm presently stable (hopefully) and am looking at other trials.  I see Dr. Wolchok in January and also made an appt with your Dr. Weber.  Happy holidays!

                                          • December 22, 2015 at 5:12 pm
                                          Mat
                                          Participant

                                            Thanks Celeste.  Long story for me.  I pursued TIL at MDA, but alas my cells didn't grow.  I'm presently stable (hopefully) and am looking at other trials.  I see Dr. Wolchok in January and also made an appt with your Dr. Weber.  Happy holidays!

                                            • December 22, 2015 at 2:11 am
                                            Bubbles
                                            Participant

                                              Sorry for the intrusion to the post….(The only thing I have to offer regarding prednisone is rather inconsequential….when I had to have mega doses post brain met zappage…I was hoping for all the energy to clean the house and do all this amazing stuff with one hand tied behind my back….and all I felt was completely exhausted….like my legs weighed 2 zillion pounds…EACH!!! But….it wore off rather quickly when I was allowed to come off the meds.)….but….have to ask:  Mat…how do you be????  love, c

                                              • December 22, 2015 at 2:11 am
                                              Bubbles
                                              Participant

                                                Sorry for the intrusion to the post….(The only thing I have to offer regarding prednisone is rather inconsequential….when I had to have mega doses post brain met zappage…I was hoping for all the energy to clean the house and do all this amazing stuff with one hand tied behind my back….and all I felt was completely exhausted….like my legs weighed 2 zillion pounds…EACH!!! But….it wore off rather quickly when I was allowed to come off the meds.)….but….have to ask:  Mat…how do you be????  love, c

                                              • December 21, 2015 at 4:10 pm
                                              Mat
                                              Participant

                                                You may need a higher dosage until the diarrhea is under control.  I developed moderate colitis while on ipi.  I think I was up to ~160mg (which was the max for my weight) at one point.  The taper takes a number of weeks.  I don't recall exactly, but maybe it was 6-8 weeks?

                                                • December 21, 2015 at 4:10 pm
                                                Mat
                                                Participant

                                                  You may need a higher dosage until the diarrhea is under control.  I developed moderate colitis while on ipi.  I think I was up to ~160mg (which was the max for my weight) at one point.  The taper takes a number of weeks.  I don't recall exactly, but maybe it was 6-8 weeks?

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