MRF-Logo2019-Horizontal-RGB
Adrenal Insufficiency/ Hypophysitis longer term
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Adrenal Insufficiency/ Hypophysitis longer term

› Forums › General Melanoma Community › Adrenal Insufficiency/ Hypophysitis longer term

  • Post
    • September 23, 2014 at 8:47 pm
    katie1
    Participant

      I'm wondering how people are doing with their adrenal insufficiency over the longer term.  Have you had to change your steroid dosages over time.  If you have had recurrence has it necessitated a change in dosage.  Have you had symptoms of adrenal insufficiency without a known cause (ie illness)?

      There doesn't seem much in the literature about long term maintenance of Ipi induced adrenal insufficiency. I have only found articles that describe the phenomenon.   My husband participated in the adjuvant Ipi (3mg/kg) trial and developed hypophysitis a year ago following the 4th induction dose. 

      The general attitude seems to be take some medication and all will be well.  I'm wondering if that is the general experience.

      Kate

    Viewing 5 reply threads
    • Replies
        • September 24, 2014 at 8:33 pm
        Jennifer Martin
        Participant

          Adrenal insuffiecency is extremely dangerous.  Adrenal crisis is deadly.  Please read up on ALL of the symptoms of adrenal crisis.  There is  fantastic Facebook group I can add you to if you are interested.  If so, I just need your email address to add you.

          • September 24, 2014 at 8:33 pm
          Jennifer Martin
          Participant

            Adrenal insuffiecency is extremely dangerous.  Adrenal crisis is deadly.  Please read up on ALL of the symptoms of adrenal crisis.  There is  fantastic Facebook group I can add you to if you are interested.  If so, I just need your email address to add you.

            • September 24, 2014 at 8:33 pm
            Jennifer Martin
            Participant

              Adrenal insuffiecency is extremely dangerous.  Adrenal crisis is deadly.  Please read up on ALL of the symptoms of adrenal crisis.  There is  fantastic Facebook group I can add you to if you are interested.  If so, I just need your email address to add you.

                • September 24, 2014 at 9:17 pm
                katie1
                Participant

                  Thanks.  I am actually well aware of symptoms of adrenal crisis and adrenal insufficiency.  My husband developed grade 4 hypophysitis (despite high dose steroid treatment) a year ago. He has since become symptomatic with no known trigger/ cause multiple times.  He's also needed to have his dosage adjusted several times over the course of the last year (partly because his endocrinologist initially kept him on the low side hoping his cortisol level would increase (as his thyroid and testosterone did). I'm just wondering if anyone else is experiencing symptoms with no known trigger.  He had Ipi in the adjuvant setting.  From the preliminary data there has been an increased incidence of hypophysitis in this population.  I'm mostly curious if there is also a difference in how this population is presenting.

                  The good news is 18 months after a stage IIIC diagnosis, he remains NED

                  Kate

                  • September 26, 2014 at 9:09 am
                  Rod
                  Participant

                    I'm always curious about long term. I went into adrenal crisis after my second dose of Yervoy.(10mg. dose)

                    Just this week had appointment with endocrinologist and he told me about a medical report that just came out in July.

                    Supposedly  a study of Yervoy induced endocrine failures and told me that it is rare that Cortisol production returns.

                    Very good to hear that your husband is 18 months NED as I'm now 

                    months NED and getting ready for scans in 2 weeks.

                    • September 26, 2014 at 11:41 am
                    katie1
                    Participant

                      Thanks Rod,  Studies do seem to indicate that the adreneal insufficiency will be life long.  My husband's docs have theorized that initially he had a bit of cortisol production and it subsided which may account for the changing steroid needs. ….the life of a rattie. Hope your scans remain clear.

                      Kate

                      • September 26, 2014 at 11:41 am
                      katie1
                      Participant

                        Thanks Rod,  Studies do seem to indicate that the adreneal insufficiency will be life long.  My husband's docs have theorized that initially he had a bit of cortisol production and it subsided which may account for the changing steroid needs. ….the life of a rattie. Hope your scans remain clear.

                        Kate

                        • September 26, 2014 at 11:41 am
                        katie1
                        Participant

                          Thanks Rod,  Studies do seem to indicate that the adreneal insufficiency will be life long.  My husband's docs have theorized that initially he had a bit of cortisol production and it subsided which may account for the changing steroid needs. ….the life of a rattie. Hope your scans remain clear.

                          Kate

                          • September 26, 2014 at 9:09 am
                          Rod
                          Participant

                            I'm always curious about long term. I went into adrenal crisis after my second dose of Yervoy.(10mg. dose)

                            Just this week had appointment with endocrinologist and he told me about a medical report that just came out in July.

                            Supposedly  a study of Yervoy induced endocrine failures and told me that it is rare that Cortisol production returns.

                            Very good to hear that your husband is 18 months NED as I'm now 

                            months NED and getting ready for scans in 2 weeks.

                            • September 26, 2014 at 9:09 am
                            Rod
                            Participant

                              I'm always curious about long term. I went into adrenal crisis after my second dose of Yervoy.(10mg. dose)

                              Just this week had appointment with endocrinologist and he told me about a medical report that just came out in July.

                              Supposedly  a study of Yervoy induced endocrine failures and told me that it is rare that Cortisol production returns.

                              Very good to hear that your husband is 18 months NED as I'm now 

                              months NED and getting ready for scans in 2 weeks.

                              • September 24, 2014 at 9:17 pm
                              katie1
                              Participant

                                Thanks.  I am actually well aware of symptoms of adrenal crisis and adrenal insufficiency.  My husband developed grade 4 hypophysitis (despite high dose steroid treatment) a year ago. He has since become symptomatic with no known trigger/ cause multiple times.  He's also needed to have his dosage adjusted several times over the course of the last year (partly because his endocrinologist initially kept him on the low side hoping his cortisol level would increase (as his thyroid and testosterone did). I'm just wondering if anyone else is experiencing symptoms with no known trigger.  He had Ipi in the adjuvant setting.  From the preliminary data there has been an increased incidence of hypophysitis in this population.  I'm mostly curious if there is also a difference in how this population is presenting.

                                The good news is 18 months after a stage IIIC diagnosis, he remains NED

                                Kate

                                • September 24, 2014 at 9:17 pm
                                katie1
                                Participant

                                  Thanks.  I am actually well aware of symptoms of adrenal crisis and adrenal insufficiency.  My husband developed grade 4 hypophysitis (despite high dose steroid treatment) a year ago. He has since become symptomatic with no known trigger/ cause multiple times.  He's also needed to have his dosage adjusted several times over the course of the last year (partly because his endocrinologist initially kept him on the low side hoping his cortisol level would increase (as his thyroid and testosterone did). I'm just wondering if anyone else is experiencing symptoms with no known trigger.  He had Ipi in the adjuvant setting.  From the preliminary data there has been an increased incidence of hypophysitis in this population.  I'm mostly curious if there is also a difference in how this population is presenting.

                                  The good news is 18 months after a stage IIIC diagnosis, he remains NED

                                  Kate

                                • September 26, 2014 at 3:35 pm
                                Bubbles
                                Participant

                                  Hi Kate,

                                  Here is some info that may, or may not, be helpful to you that I just posted:

                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/ipi-induced-hypophysitis.html

                                  There does seem to be some positive survival factors attached to hypophysitis at least!!!  Perhaps contacting the authors could give you more intel as well.  The study was done out of MA General and Harvard Medical School.

                                  Yours, Celeste

                                  • September 26, 2014 at 3:35 pm
                                  Bubbles
                                  Participant

                                    Hi Kate,

                                    Here is some info that may, or may not, be helpful to you that I just posted:

                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/ipi-induced-hypophysitis.html

                                    There does seem to be some positive survival factors attached to hypophysitis at least!!!  Perhaps contacting the authors could give you more intel as well.  The study was done out of MA General and Harvard Medical School.

                                    Yours, Celeste

                                      • September 26, 2014 at 3:49 pm
                                      katie1
                                      Participant

                                        Thanks so much Celeste,

                                        I had seen this but it was great for you to post.it on your blog!  My husband's case is part of a journal article submitted for publications.  I believe all subjects developed hypophysitis in the adjuvant setting.  I guess time will tell how this group does.

                                        Yours, Kate

                                        • September 26, 2014 at 3:49 pm
                                        katie1
                                        Participant

                                          Thanks so much Celeste,

                                          I had seen this but it was great for you to post.it on your blog!  My husband's case is part of a journal article submitted for publications.  I believe all subjects developed hypophysitis in the adjuvant setting.  I guess time will tell how this group does.

                                          Yours, Kate

                                          • September 28, 2014 at 10:30 pm
                                          buffcody
                                          Participant

                                            Hi Kate,

                                             

                                            I had a hypophysitis reaction to my ipi injections, though none of my doctors was definitive enough about the ipi causing it. Just the fact that I had hypophysitis following ipi (not necessarily caused by it???).  The hypop symptoms for me , though, did not emerge right away.  Even if  they had, there would have been no easy spotting of it, since pre- and post- measurements of the accompanying blood values were not made. 

                                            I was put on steroid medications after suffering seizures 5 months after completing the ipi course and remained on them for 13 months following.  I developed major thyroid problems about 10 months ago, and it was in testing for those that it was discovered that I had almost no cortisol and ACTH being produced.  I had by that time been reduced to a quite low dosage of hydrocortisone, which the endocrinologist did not increase. 

                                            Finally, after I returned to the normal range (lowest end) on cortisol and ACTH, he recommended a total withdrawal from the hydrocortisone because  the numbers were now  o.k.  About three weeks later, I hit a terribly low ebb.  Energy almost non-existent.  I did not connect this new state  with being taken off the hydrocortisone since I was still trying to have my thyroid regulated and thought that might be the cause.   After feeling awful for two months, my oncologist thought that going back on the hydorocortisone "might" help.  After doubling my previous dosage (20 mg. from 10), I felt much better within a day and have continued to feel much better for the last five weeks. 

                                            I don't believe my endocrinologist was ever that conversant with the potential hypophysitis' effects of ipi. He said the causality (pi or not) was unimportant.  His reasoning was,  .Yur pituitary was not working, then it was.  Proven by the numbers.  Your numbers now are within the normal range.  Your pituitary is working.  Case closed. 

                                            So what I offer is not really an answer to your question but the example of someone with similar problems to your husband's.  I have no idea what the future holds.  Just glad to be feeling better after feeling zero.

                                            • September 28, 2014 at 10:30 pm
                                            buffcody
                                            Participant

                                              Hi Kate,

                                               

                                              I had a hypophysitis reaction to my ipi injections, though none of my doctors was definitive enough about the ipi causing it. Just the fact that I had hypophysitis following ipi (not necessarily caused by it???).  The hypop symptoms for me , though, did not emerge right away.  Even if  they had, there would have been no easy spotting of it, since pre- and post- measurements of the accompanying blood values were not made. 

                                              I was put on steroid medications after suffering seizures 5 months after completing the ipi course and remained on them for 13 months following.  I developed major thyroid problems about 10 months ago, and it was in testing for those that it was discovered that I had almost no cortisol and ACTH being produced.  I had by that time been reduced to a quite low dosage of hydrocortisone, which the endocrinologist did not increase. 

                                              Finally, after I returned to the normal range (lowest end) on cortisol and ACTH, he recommended a total withdrawal from the hydrocortisone because  the numbers were now  o.k.  About three weeks later, I hit a terribly low ebb.  Energy almost non-existent.  I did not connect this new state  with being taken off the hydrocortisone since I was still trying to have my thyroid regulated and thought that might be the cause.   After feeling awful for two months, my oncologist thought that going back on the hydorocortisone "might" help.  After doubling my previous dosage (20 mg. from 10), I felt much better within a day and have continued to feel much better for the last five weeks. 

                                              I don't believe my endocrinologist was ever that conversant with the potential hypophysitis' effects of ipi. He said the causality (pi or not) was unimportant.  His reasoning was,  .Yur pituitary was not working, then it was.  Proven by the numbers.  Your numbers now are within the normal range.  Your pituitary is working.  Case closed. 

                                              So what I offer is not really an answer to your question but the example of someone with similar problems to your husband's.  I have no idea what the future holds.  Just glad to be feeling better after feeling zero.

                                              • September 28, 2014 at 10:30 pm
                                              buffcody
                                              Participant

                                                Hi Kate,

                                                 

                                                I had a hypophysitis reaction to my ipi injections, though none of my doctors was definitive enough about the ipi causing it. Just the fact that I had hypophysitis following ipi (not necessarily caused by it???).  The hypop symptoms for me , though, did not emerge right away.  Even if  they had, there would have been no easy spotting of it, since pre- and post- measurements of the accompanying blood values were not made. 

                                                I was put on steroid medications after suffering seizures 5 months after completing the ipi course and remained on them for 13 months following.  I developed major thyroid problems about 10 months ago, and it was in testing for those that it was discovered that I had almost no cortisol and ACTH being produced.  I had by that time been reduced to a quite low dosage of hydrocortisone, which the endocrinologist did not increase. 

                                                Finally, after I returned to the normal range (lowest end) on cortisol and ACTH, he recommended a total withdrawal from the hydrocortisone because  the numbers were now  o.k.  About three weeks later, I hit a terribly low ebb.  Energy almost non-existent.  I did not connect this new state  with being taken off the hydrocortisone since I was still trying to have my thyroid regulated and thought that might be the cause.   After feeling awful for two months, my oncologist thought that going back on the hydorocortisone "might" help.  After doubling my previous dosage (20 mg. from 10), I felt much better within a day and have continued to feel much better for the last five weeks. 

                                                I don't believe my endocrinologist was ever that conversant with the potential hypophysitis' effects of ipi. He said the causality (pi or not) was unimportant.  His reasoning was,  .Yur pituitary was not working, then it was.  Proven by the numbers.  Your numbers now are within the normal range.  Your pituitary is working.  Case closed. 

                                                So what I offer is not really an answer to your question but the example of someone with similar problems to your husband's.  I have no idea what the future holds.  Just glad to be feeling better after feeling zero.

                                                • September 26, 2014 at 3:49 pm
                                                katie1
                                                Participant

                                                  Thanks so much Celeste,

                                                  I had seen this but it was great for you to post.it on your blog!  My husband's case is part of a journal article submitted for publications.  I believe all subjects developed hypophysitis in the adjuvant setting.  I guess time will tell how this group does.

                                                  Yours, Kate

                                                • September 26, 2014 at 3:35 pm
                                                Bubbles
                                                Participant

                                                  Hi Kate,

                                                  Here is some info that may, or may not, be helpful to you that I just posted:

                                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/ipi-induced-hypophysitis.html

                                                  There does seem to be some positive survival factors attached to hypophysitis at least!!!  Perhaps contacting the authors could give you more intel as well.  The study was done out of MA General and Harvard Medical School.

                                                  Yours, Celeste

                                              Viewing 5 reply threads
                                              • You must be logged in to reply to this topic.
                                              About the MRF Patient Forum

                                              The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                              The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                              Popular Topics