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.

prednisone, low cortisol,stress dose anyone??

Forums General Melanoma Community prednisone, low cortisol,stress dose anyone??

  • Post
    Tina D
    Participant

      Anyone have adrenal insufficiency due to treatments and if so, does your Doc give you a "stress dose" option for your prednisone? In times of added demands either physical or emotional . I am having extra fatigue, and am in the midst of some demanding stressors at the moment. Thyroid was also low again, so the dosage adjustment may take care of it, but if not, they told me we can discuss the prednisone next visit. Just wondering what others are doing. Thanks! I have been on 5 mg pred for long time, after pituitary inflammation brought on by ipi last year ( started on 60 and tapered to 5 eventually) I also have a history even prior to the ipi of likely being adrenal insufficient, always requiring Cortisol to keep any BP during and after surgeries.

      Thanks!

      Tina

    Viewing 8 reply threads
    • Replies
        katie1
        Participant

          My husband developed adrenal insufficiency following Ipi.  He is maintained on Hydrocortisone and is treated by an endocrinologist (as well as his oncologist).  She has given him guidelines for increasing his Hydrocortisone at times of illness/stress.  In general, he doubles his dose but she has given different recommendations for different types of events.  He did actually have an adrenal crisis following his initial taper off of the high dose steroids (given to treat his hypophysitis).  He was asymptomatic off the steroids and with no warning went into crisis.  He is now maintained on a sub-physiologic dose but without it his cortisol levels are very low.  Following the treatment with the high dose of prednisone all his other hormones returned to normal and he has required no other supplementation.  If you are not seeing an endocrinologist that might be something to consider.  Although, finding one with experience with Ipi might be a bit of a challenge.

          Kate

            meg
            Participant

              I developed hypophisitis and adrenal insufficiency (AI) in the 11th week of 'ipi'.  It is on their insert that it is the median time ranging up to 19 wks for endocrinopathy.   The fatigue, no appetite, were the major symptoms, also diarrhea.  Easy to confuse with colitis, but I recognize now as associated with 'stressor' times, and I need hydrocortisone.  I have no thyroid problems whitch can accompany an inflammed pituitary, yet.

              My endocrinologist has seen 50 cases of AI from ipi  (I am at Dana Farber in nivo-ipi trial) and he relayed that it was most likely permanent and is not one of the reversible toxicities. 

              I had intense orientation to the disease and all the cautions (I'm an NP).  And I needed it.  The dose is in my control.  Hydrocortisione 15-30 mg/day  with the major dose or 10-20 mg in the am.  The rest in the afternoon, Never more that 30 mg. unless under fever rules (see previous post).  I may not feel stressed by activity but my body sure tells me my cortisol is low…fatigue, muscle aches, low appetite, both stomach and lower abdominal aches, finally diarrhea.  That is my 'ah ah' moment.  I have also noticed that stomach symptoms or aches may start at 3-4 pm if i'm late with the afternoon dose.

              I was taking Tylenol for various aches and now realize it also may be due to AI.  Recently, my white blood count was noted as slowly drifting down over 2-3 mo. into the critical range.  They wanted a repeat in a week.  I related to the Clinical Trial team that it may be due to AI and I was now correlating various vague symptoms over the last 2 mo. to low cortisol and  maybe I needed to up the dose slightly over the next week. And the count came back to normal range.

              Traveling, extra exercise, excitement of friends, any fast spontaneous fun can leave me fatigued that evening and struggling to get out of bed the next day. 

              I've become more liberal with the hydrocortisone staying closer to 25 that the origianlly recommeded 15.

              It is still considered a physiologic dose as opposed to treatment dose.

              I recognize stress in lots areas and am still learning to read my body symptoms and adjust the dose for more fun in my life.

              meg
              Participant

                I developed hypophisitis and adrenal insufficiency (AI) in the 11th week of 'ipi'.  It is on their insert that it is the median time ranging up to 19 wks for endocrinopathy.   The fatigue, no appetite, were the major symptoms, also diarrhea.  Easy to confuse with colitis, but I recognize now as associated with 'stressor' times, and I need hydrocortisone.  I have no thyroid problems whitch can accompany an inflammed pituitary, yet.

                My endocrinologist has seen 50 cases of AI from ipi  (I am at Dana Farber in nivo-ipi trial) and he relayed that it was most likely permanent and is not one of the reversible toxicities. 

                I had intense orientation to the disease and all the cautions (I'm an NP).  And I needed it.  The dose is in my control.  Hydrocortisione 15-30 mg/day  with the major dose or 10-20 mg in the am.  The rest in the afternoon, Never more that 30 mg. unless under fever rules (see previous post).  I may not feel stressed by activity but my body sure tells me my cortisol is low…fatigue, muscle aches, low appetite, both stomach and lower abdominal aches, finally diarrhea.  That is my 'ah ah' moment.  I have also noticed that stomach symptoms or aches may start at 3-4 pm if i'm late with the afternoon dose.

                I was taking Tylenol for various aches and now realize it also may be due to AI.  Recently, my white blood count was noted as slowly drifting down over 2-3 mo. into the critical range.  They wanted a repeat in a week.  I related to the Clinical Trial team that it may be due to AI and I was now correlating various vague symptoms over the last 2 mo. to low cortisol and  maybe I needed to up the dose slightly over the next week. And the count came back to normal range.

                Traveling, extra exercise, excitement of friends, any fast spontaneous fun can leave me fatigued that evening and struggling to get out of bed the next day. 

                I've become more liberal with the hydrocortisone staying closer to 25 that the origianlly recommeded 15.

                It is still considered a physiologic dose as opposed to treatment dose.

                I recognize stress in lots areas and am still learning to read my body symptoms and adjust the dose for more fun in my life.

                meg
                Participant

                  I developed hypophisitis and adrenal insufficiency (AI) in the 11th week of 'ipi'.  It is on their insert that it is the median time ranging up to 19 wks for endocrinopathy.   The fatigue, no appetite, were the major symptoms, also diarrhea.  Easy to confuse with colitis, but I recognize now as associated with 'stressor' times, and I need hydrocortisone.  I have no thyroid problems whitch can accompany an inflammed pituitary, yet.

                  My endocrinologist has seen 50 cases of AI from ipi  (I am at Dana Farber in nivo-ipi trial) and he relayed that it was most likely permanent and is not one of the reversible toxicities. 

                  I had intense orientation to the disease and all the cautions (I'm an NP).  And I needed it.  The dose is in my control.  Hydrocortisione 15-30 mg/day  with the major dose or 10-20 mg in the am.  The rest in the afternoon, Never more that 30 mg. unless under fever rules (see previous post).  I may not feel stressed by activity but my body sure tells me my cortisol is low…fatigue, muscle aches, low appetite, both stomach and lower abdominal aches, finally diarrhea.  That is my 'ah ah' moment.  I have also noticed that stomach symptoms or aches may start at 3-4 pm if i'm late with the afternoon dose.

                  I was taking Tylenol for various aches and now realize it also may be due to AI.  Recently, my white blood count was noted as slowly drifting down over 2-3 mo. into the critical range.  They wanted a repeat in a week.  I related to the Clinical Trial team that it may be due to AI and I was now correlating various vague symptoms over the last 2 mo. to low cortisol and  maybe I needed to up the dose slightly over the next week. And the count came back to normal range.

                  Traveling, extra exercise, excitement of friends, any fast spontaneous fun can leave me fatigued that evening and struggling to get out of bed the next day. 

                  I've become more liberal with the hydrocortisone staying closer to 25 that the origianlly recommeded 15.

                  It is still considered a physiologic dose as opposed to treatment dose.

                  I recognize stress in lots areas and am still learning to read my body symptoms and adjust the dose for more fun in my life.

                katie1
                Participant

                  My husband developed adrenal insufficiency following Ipi.  He is maintained on Hydrocortisone and is treated by an endocrinologist (as well as his oncologist).  She has given him guidelines for increasing his Hydrocortisone at times of illness/stress.  In general, he doubles his dose but she has given different recommendations for different types of events.  He did actually have an adrenal crisis following his initial taper off of the high dose steroids (given to treat his hypophysitis).  He was asymptomatic off the steroids and with no warning went into crisis.  He is now maintained on a sub-physiologic dose but without it his cortisol levels are very low.  Following the treatment with the high dose of prednisone all his other hormones returned to normal and he has required no other supplementation.  If you are not seeing an endocrinologist that might be something to consider.  Although, finding one with experience with Ipi might be a bit of a challenge.

                  Kate

                  katie1
                  Participant

                    My husband developed adrenal insufficiency following Ipi.  He is maintained on Hydrocortisone and is treated by an endocrinologist (as well as his oncologist).  She has given him guidelines for increasing his Hydrocortisone at times of illness/stress.  In general, he doubles his dose but she has given different recommendations for different types of events.  He did actually have an adrenal crisis following his initial taper off of the high dose steroids (given to treat his hypophysitis).  He was asymptomatic off the steroids and with no warning went into crisis.  He is now maintained on a sub-physiologic dose but without it his cortisol levels are very low.  Following the treatment with the high dose of prednisone all his other hormones returned to normal and he has required no other supplementation.  If you are not seeing an endocrinologist that might be something to consider.  Although, finding one with experience with Ipi might be a bit of a challenge.

                    Kate

                    BrianP
                    Participant

                      Hey Tina D,

                      As you know my experience is almost identical to your's.  I am also taking the 5mg daily.  My endocrinologist told me in times of high stress and/or sickness that I should take an extra 2.5mg in the late afternoon/early evening timeframe.  Also mentioned that if I get to where I'm feeling really run down in the evenings that I might need to add the extra dose.  She kind of made it seem like a day by day decision by me.  Other than a couple days where I got REALLY SICK I haven't needed the extra dose.  It was interesting during that time I was really sick because it was almost the same type headache I was having back when the hyperphisitis started.  Hope that helps.

                      Brian

                        Tina D
                        Participant

                          Thank you both. Brian… I also had the same type headache with this fatigue ( no where near as severe)! I have been doing ok up until the extra demands.I will be discussing this with Dr next visit, so these responses are helpful. Thanks to you both!

                          Tina

                          Tina D
                          Participant

                            Thank you both. Brian… I also had the same type headache with this fatigue ( no where near as severe)! I have been doing ok up until the extra demands.I will be discussing this with Dr next visit, so these responses are helpful. Thanks to you both!

                            Tina

                            jogo
                            Participant

                              Tina, Kate, and Brian, thank you for your postings!  I was so involved with my ipi induced ulcerative colitis that I ignored my constant headaches and thought the orthostatic hypotension I had in the hospital was resolved by the 0.1 mg b.i.d. fludrocortisone.  I reduced my intake of prednisone from 100 mg/day by reducing 5 mg every 5 days until I was taking 5 mg/day.  After an ACTH test 2 weeks ago, my endocrinologist took me off the prednisone and fludrocortisone.  Three days later I was, and still am, constantly tired.  My entomologist told me to carry the prednisone and fludrocortisone with me and take them when I'm overwhelmed by fatigue and stress.  I'm having extensive dental work in 2 weeks.  I'm not a happy dental patient to begin with and I'm concerned about dealing with the stress.  The ACTH test showed that my cortisol level was raised to normal range when I received ACTH by I.V.  What I don't know is if my pituitary gland can produce ACTH to stimulate my adrenal cortex to produce cortisol.  I'm concerned about the possibility of hypophysitis. I'm scheduled for an MRI next month.  I realize now that I need more explicit instructions with regards to prednisone and fludrocortisone dosages.  Again, thank you for your postings!yes

                              jogo
                              Participant

                                Tina, Kate, and Brian, thank you for your postings!  I was so involved with my ipi induced ulcerative colitis that I ignored my constant headaches and thought the orthostatic hypotension I had in the hospital was resolved by the 0.1 mg b.i.d. fludrocortisone.  I reduced my intake of prednisone from 100 mg/day by reducing 5 mg every 5 days until I was taking 5 mg/day.  After an ACTH test 2 weeks ago, my endocrinologist took me off the prednisone and fludrocortisone.  Three days later I was, and still am, constantly tired.  My entomologist told me to carry the prednisone and fludrocortisone with me and take them when I'm overwhelmed by fatigue and stress.  I'm having extensive dental work in 2 weeks.  I'm not a happy dental patient to begin with and I'm concerned about dealing with the stress.  The ACTH test showed that my cortisol level was raised to normal range when I received ACTH by I.V.  What I don't know is if my pituitary gland can produce ACTH to stimulate my adrenal cortex to produce cortisol.  I'm concerned about the possibility of hypophysitis. I'm scheduled for an MRI next month.  I realize now that I need more explicit instructions with regards to prednisone and fludrocortisone dosages.  Again, thank you for your postings!yes

                                Tina D
                                Participant

                                  Wow, 100mg is a whopping dose!! I think I actually might have started at 80, but not sure now,ha. Anyway… my hypophysitis was diagnosed by labs showing the hormonal issues, both thyroid and adrenal levels were affected, and by my severe symptoms. I did have a brain MRI, but it was not diagnosed at that point. I have always had real problems during and after surgeries… so one thing to be sure is ALWAYS let any surgeon or anesthesiologist know you have been adrenal insufficient in the past so they can be on the alert and know what to do. It sounds like your adrenals are recovering, and THAT is awesome. I think most times the pituitary also recovers, so hopefully you are on your way to balance once again ๐Ÿ™‚   . I have to laugh at myself because I hate to take anything at all ( funny with all the toxic things I have been on,lol) and so I have asked repeatedly if they'd consider trying to taper the pred. Then, last time I went in I started asking about extra "stress doses" , HAHA! They hate to mess with it too much since I am in clinical trial and we all prefer to not "rock the boat" and cause problems. If you think of it, let me know what they decide for you. I am pretty sure your endo can do a test to see if the piuitary is producing sufficient ACTH.

                                  As for the dental appt… maybe ask for conscious sedation? I have a loved one that does that and sleeps through everything with no remembrance at all. Just a thought….

                                  Tina

                                  Tina D
                                  Participant

                                    Wow, 100mg is a whopping dose!! I think I actually might have started at 80, but not sure now,ha. Anyway… my hypophysitis was diagnosed by labs showing the hormonal issues, both thyroid and adrenal levels were affected, and by my severe symptoms. I did have a brain MRI, but it was not diagnosed at that point. I have always had real problems during and after surgeries… so one thing to be sure is ALWAYS let any surgeon or anesthesiologist know you have been adrenal insufficient in the past so they can be on the alert and know what to do. It sounds like your adrenals are recovering, and THAT is awesome. I think most times the pituitary also recovers, so hopefully you are on your way to balance once again ๐Ÿ™‚   . I have to laugh at myself because I hate to take anything at all ( funny with all the toxic things I have been on,lol) and so I have asked repeatedly if they'd consider trying to taper the pred. Then, last time I went in I started asking about extra "stress doses" , HAHA! They hate to mess with it too much since I am in clinical trial and we all prefer to not "rock the boat" and cause problems. If you think of it, let me know what they decide for you. I am pretty sure your endo can do a test to see if the piuitary is producing sufficient ACTH.

                                    As for the dental appt… maybe ask for conscious sedation? I have a loved one that does that and sleeps through everything with no remembrance at all. Just a thought….

                                    Tina

                                    Tina D
                                    Participant

                                      Wow, 100mg is a whopping dose!! I think I actually might have started at 80, but not sure now,ha. Anyway… my hypophysitis was diagnosed by labs showing the hormonal issues, both thyroid and adrenal levels were affected, and by my severe symptoms. I did have a brain MRI, but it was not diagnosed at that point. I have always had real problems during and after surgeries… so one thing to be sure is ALWAYS let any surgeon or anesthesiologist know you have been adrenal insufficient in the past so they can be on the alert and know what to do. It sounds like your adrenals are recovering, and THAT is awesome. I think most times the pituitary also recovers, so hopefully you are on your way to balance once again ๐Ÿ™‚   . I have to laugh at myself because I hate to take anything at all ( funny with all the toxic things I have been on,lol) and so I have asked repeatedly if they'd consider trying to taper the pred. Then, last time I went in I started asking about extra "stress doses" , HAHA! They hate to mess with it too much since I am in clinical trial and we all prefer to not "rock the boat" and cause problems. If you think of it, let me know what they decide for you. I am pretty sure your endo can do a test to see if the piuitary is producing sufficient ACTH.

                                      As for the dental appt… maybe ask for conscious sedation? I have a loved one that does that and sleeps through everything with no remembrance at all. Just a thought….

                                      Tina

                                      jogo
                                      Participant

                                        Tina, Kate, and Brian, thank you for your postings!  I was so involved with my ipi induced ulcerative colitis that I ignored my constant headaches and thought the orthostatic hypotension I had in the hospital was resolved by the 0.1 mg b.i.d. fludrocortisone.  I reduced my intake of prednisone from 100 mg/day by reducing 5 mg every 5 days until I was taking 5 mg/day.  After an ACTH test 2 weeks ago, my endocrinologist took me off the prednisone and fludrocortisone.  Three days later I was, and still am, constantly tired.  My entomologist told me to carry the prednisone and fludrocortisone with me and take them when I'm overwhelmed by fatigue and stress.  I'm having extensive dental work in 2 weeks.  I'm not a happy dental patient to begin with and I'm concerned about dealing with the stress.  The ACTH test showed that my cortisol level was raised to normal range when I received ACTH by I.V.  What I don't know is if my pituitary gland can produce ACTH to stimulate my adrenal cortex to produce cortisol.  I'm concerned about the possibility of hypophysitis. I'm scheduled for an MRI next month.  I realize now that I need more explicit instructions with regards to prednisone and fludrocortisone dosages.  Again, thank you for your postings!yes

                                        Tina D
                                        Participant

                                          Thank you both. Brian… I also had the same type headache with this fatigue ( no where near as severe)! I have been doing ok up until the extra demands.I will be discussing this with Dr next visit, so these responses are helpful. Thanks to you both!

                                          Tina

                                          Tina D
                                          Participant

                                            How are you doing, Brian? Thinking you are coming up to scans again soon? 

                                            Tina

                                            Tina D
                                            Participant

                                              How are you doing, Brian? Thinking you are coming up to scans again soon? 

                                              Tina

                                              BrianP
                                              Participant

                                                Hey Tina,

                                                I had scans last Monday.  I'm not having the "ideal" nivo recovery if there is such a thing.  After ipi if you remember my original two nodes were stable but I had numerous new mets scattered throughout my right lung.  After returning to nivo and receiving 4 infusions the good news is most of the mets in my lungs have resolved and just a handful of the larger ones remain (reduced from about 6-7mm down to 2-3mm).  The luke warm news is that my two original nodes are stable.  I know stable is good when you are talking about melanoma but as you know we all aim for NED but I guess for now I'll have to settle for stable.  The potentially not so good news is there is reported "thickening" of the small bowel at the original site of my resection which is "concerning for metastatic melanoma".  I'm going to have a petscan next week to see if there is anything that can be seen with the pet.  My experience has been pets are a little better at finding things in the GI tract.  The whole thing is a little concerning because if there is melanoma found I will probably be taken off the trial.  Hopefully it will turn out to be nothing because it's obvious nivo is doing me some good so I would like to stay on it if possible. 

                                                Anyway, long answer to a short question.  Thanks for asking.

                                                Brian

                                                BrianP
                                                Participant

                                                  Hey Tina,

                                                  I had scans last Monday.  I'm not having the "ideal" nivo recovery if there is such a thing.  After ipi if you remember my original two nodes were stable but I had numerous new mets scattered throughout my right lung.  After returning to nivo and receiving 4 infusions the good news is most of the mets in my lungs have resolved and just a handful of the larger ones remain (reduced from about 6-7mm down to 2-3mm).  The luke warm news is that my two original nodes are stable.  I know stable is good when you are talking about melanoma but as you know we all aim for NED but I guess for now I'll have to settle for stable.  The potentially not so good news is there is reported "thickening" of the small bowel at the original site of my resection which is "concerning for metastatic melanoma".  I'm going to have a petscan next week to see if there is anything that can be seen with the pet.  My experience has been pets are a little better at finding things in the GI tract.  The whole thing is a little concerning because if there is melanoma found I will probably be taken off the trial.  Hopefully it will turn out to be nothing because it's obvious nivo is doing me some good so I would like to stay on it if possible. 

                                                  Anyway, long answer to a short question.  Thanks for asking.

                                                  Brian

                                                  BrianP
                                                  Participant

                                                    Hey Tina,

                                                    I had scans last Monday.  I'm not having the "ideal" nivo recovery if there is such a thing.  After ipi if you remember my original two nodes were stable but I had numerous new mets scattered throughout my right lung.  After returning to nivo and receiving 4 infusions the good news is most of the mets in my lungs have resolved and just a handful of the larger ones remain (reduced from about 6-7mm down to 2-3mm).  The luke warm news is that my two original nodes are stable.  I know stable is good when you are talking about melanoma but as you know we all aim for NED but I guess for now I'll have to settle for stable.  The potentially not so good news is there is reported "thickening" of the small bowel at the original site of my resection which is "concerning for metastatic melanoma".  I'm going to have a petscan next week to see if there is anything that can be seen with the pet.  My experience has been pets are a little better at finding things in the GI tract.  The whole thing is a little concerning because if there is melanoma found I will probably be taken off the trial.  Hopefully it will turn out to be nothing because it's obvious nivo is doing me some good so I would like to stay on it if possible. 

                                                    Anyway, long answer to a short question.  Thanks for asking.

                                                    Brian

                                                    Tina D
                                                    Participant

                                                      Brian,

                                                      Yes, I sure understand about the "stable" part. We all want to be NED, even though we appreciate stable over progression. My last 2 scans have been "stable", though the Dr indicated he feels there may be no active disease present. As for the thickening by original site, hopefully it is scar tissue/adhesions type of situation. Praying you get good news in that regard. I hate the thought of the waiting for you and the family. Please let me know what you find out next week.

                                                      Prayers for encouraging news,

                                                      Tina

                                                      Tina D
                                                      Participant

                                                        Brian,

                                                        Yes, I sure understand about the "stable" part. We all want to be NED, even though we appreciate stable over progression. My last 2 scans have been "stable", though the Dr indicated he feels there may be no active disease present. As for the thickening by original site, hopefully it is scar tissue/adhesions type of situation. Praying you get good news in that regard. I hate the thought of the waiting for you and the family. Please let me know what you find out next week.

                                                        Prayers for encouraging news,

                                                        Tina

                                                        Tina D
                                                        Participant

                                                          Brian,

                                                          Yes, I sure understand about the "stable" part. We all want to be NED, even though we appreciate stable over progression. My last 2 scans have been "stable", though the Dr indicated he feels there may be no active disease present. As for the thickening by original site, hopefully it is scar tissue/adhesions type of situation. Praying you get good news in that regard. I hate the thought of the waiting for you and the family. Please let me know what you find out next week.

                                                          Prayers for encouraging news,

                                                          Tina

                                                          Tina D
                                                          Participant

                                                            How are you doing, Brian? Thinking you are coming up to scans again soon? 

                                                            Tina

                                                          BrianP
                                                          Participant

                                                            Hey Tina D,

                                                            As you know my experience is almost identical to your's.  I am also taking the 5mg daily.  My endocrinologist told me in times of high stress and/or sickness that I should take an extra 2.5mg in the late afternoon/early evening timeframe.  Also mentioned that if I get to where I'm feeling really run down in the evenings that I might need to add the extra dose.  She kind of made it seem like a day by day decision by me.  Other than a couple days where I got REALLY SICK I haven't needed the extra dose.  It was interesting during that time I was really sick because it was almost the same type headache I was having back when the hyperphisitis started.  Hope that helps.

                                                            Brian

                                                            BrianP
                                                            Participant

                                                              Hey Tina D,

                                                              As you know my experience is almost identical to your's.  I am also taking the 5mg daily.  My endocrinologist told me in times of high stress and/or sickness that I should take an extra 2.5mg in the late afternoon/early evening timeframe.  Also mentioned that if I get to where I'm feeling really run down in the evenings that I might need to add the extra dose.  She kind of made it seem like a day by day decision by me.  Other than a couple days where I got REALLY SICK I haven't needed the extra dose.  It was interesting during that time I was really sick because it was almost the same type headache I was having back when the hyperphisitis started.  Hope that helps.

                                                              Brian

                                                              casagrayson
                                                              Participant

                                                                I have been dealing with adrenal insufficiency due to a pituitary tumor for over ten years.  I use hydrocortisone for stress dosing; it is a faster-acting drug than prednisone.  Here is a link to a handy chart for stress dosing before medical procedures:

                                                                http://www.addisons.org.uk/comms/publications/surgicalguidelines-colour.pdf

                                                                 

                                                                Here are the guidelines for minor illnesses:

                                                                Double your normal daily dose when you 
                                                                have a temperature of more than 37.5° Celsius
                                                                (99.5° Fahrenheit) or more than +1° Celsius
                                                                above normal.
                                                                 
                                                                Treble your normal daily dose if your
                                                                temperature rises to more than 39° Celsius 
                                                                (102° Fahrenheit).
                                                                 
                                                                Always seek medical help if your temperature
                                                                reaches 40° Celsius (104° Fahrenheit).
                                                                 
                                                                As soon as your temperature returns to normal
                                                                start to taper your steroid dose back to your
                                                                normal daily dose.
                                                                 
                                                                You do not need to increase your
                                                                fludrocortisone while you are ill because the
                                                                higher dose of hydrocortisone will provide
                                                                enough extra mineralcorticoid.
                                                                 
                                                                 
                                                                If you start vomiting or have diahrrea and cannot keep down a second dose of hydro, you should immediately inject with 100mg solu-cortef and go to the emergency room.
                                                                 
                                                                (I've had several friends die because they, or their families, did not recognize the signs of an adrenal crisis.)
                                                                casagrayson
                                                                Participant

                                                                  I have been dealing with adrenal insufficiency due to a pituitary tumor for over ten years.  I use hydrocortisone for stress dosing; it is a faster-acting drug than prednisone.  Here is a link to a handy chart for stress dosing before medical procedures:

                                                                  http://www.addisons.org.uk/comms/publications/surgicalguidelines-colour.pdf

                                                                   

                                                                  Here are the guidelines for minor illnesses:

                                                                  Double your normal daily dose when you 
                                                                  have a temperature of more than 37.5° Celsius
                                                                  (99.5° Fahrenheit) or more than +1° Celsius
                                                                  above normal.
                                                                   
                                                                  Treble your normal daily dose if your
                                                                  temperature rises to more than 39° Celsius 
                                                                  (102° Fahrenheit).
                                                                   
                                                                  Always seek medical help if your temperature
                                                                  reaches 40° Celsius (104° Fahrenheit).
                                                                   
                                                                  As soon as your temperature returns to normal
                                                                  start to taper your steroid dose back to your
                                                                  normal daily dose.
                                                                   
                                                                  You do not need to increase your
                                                                  fludrocortisone while you are ill because the
                                                                  higher dose of hydrocortisone will provide
                                                                  enough extra mineralcorticoid.
                                                                   
                                                                   
                                                                  If you start vomiting or have diahrrea and cannot keep down a second dose of hydro, you should immediately inject with 100mg solu-cortef and go to the emergency room.
                                                                   
                                                                  (I've had several friends die because they, or their families, did not recognize the signs of an adrenal crisis.)
                                                                  casagrayson
                                                                  Participant

                                                                    I have been dealing with adrenal insufficiency due to a pituitary tumor for over ten years.  I use hydrocortisone for stress dosing; it is a faster-acting drug than prednisone.  Here is a link to a handy chart for stress dosing before medical procedures:

                                                                    http://www.addisons.org.uk/comms/publications/surgicalguidelines-colour.pdf

                                                                     

                                                                    Here are the guidelines for minor illnesses:

                                                                    Double your normal daily dose when you 
                                                                    have a temperature of more than 37.5° Celsius
                                                                    (99.5° Fahrenheit) or more than +1° Celsius
                                                                    above normal.
                                                                     
                                                                    Treble your normal daily dose if your
                                                                    temperature rises to more than 39° Celsius 
                                                                    (102° Fahrenheit).
                                                                     
                                                                    Always seek medical help if your temperature
                                                                    reaches 40° Celsius (104° Fahrenheit).
                                                                     
                                                                    As soon as your temperature returns to normal
                                                                    start to taper your steroid dose back to your
                                                                    normal daily dose.
                                                                     
                                                                    You do not need to increase your
                                                                    fludrocortisone while you are ill because the
                                                                    higher dose of hydrocortisone will provide
                                                                    enough extra mineralcorticoid.
                                                                     
                                                                     
                                                                    If you start vomiting or have diahrrea and cannot keep down a second dose of hydro, you should immediately inject with 100mg solu-cortef and go to the emergency room.
                                                                     
                                                                    (I've had several friends die because they, or their families, did not recognize the signs of an adrenal crisis.)
                                                                      katie1
                                                                      Participant

                                                                        Dental work can definitely be a trigger that can cause a crisis.  You will likely need an increase in your dose (even if sedated) as there is a physiologic stress (and potential minor bacteremia) so just being sedated isn't likely enough (according to my husband's endocrinologist) for some dental procedures.  For a crown, he was advised to double his normal dose prior and if necessary add an additional dose in the afternoon if he felt any symptoms.  It is extremely important that dentists/doctors etc are aware of any issues of adrenal insufficiency.

                                                                        He also carries specific instructions for medical intervention if he arrives at the ER (given to him by his endocrinologist).  He wears a medic alert bracelet and also has injectable steroids at home (in case of prolonged diarrhea etc).  He does produce some cortisol on his own but not enough. In his case, the assumption is that there has been damage to the pituitary from the Ipi and ACTH is not being produced.

                                                                        I'm curious about the ACTH stimulation test.  My husband's endocrinologist has said his cortisol is just too low still to get any benefit from doing this test. He has routine blood work done (having held his Hydrocortisone) I'm curious if anyone has further information.

                                                                        Kate

                                                                        casagrayson
                                                                        Participant

                                                                          If his a.m. cortisol levels are still really low, there's not much sense in doing the stim test.  It isn't always a very pleasant experience.  How much hydrocortisone is he on?  Is he feeling pretty good on the dosage?  Is he taking any flourinef?  

                                                                          casagrayson
                                                                          Participant

                                                                            If his a.m. cortisol levels are still really low, there's not much sense in doing the stim test.  It isn't always a very pleasant experience.  How much hydrocortisone is he on?  Is he feeling pretty good on the dosage?  Is he taking any flourinef?  

                                                                            katie1
                                                                            Participant

                                                                              He takes only 10mg of Hydrocortisone in the am.  He sometimes takes an additional 5 mg in the afternoon if he is feeling any fatique. He feels really well on this dose. Initially they hoped his pituitary would recover the production of ACTH (as it did for the rest of his homrones).  However, it now looks like he's on replacement for the longer term. He takes no Florinef.  It would obviously be nice to not have this adrenal insufficiency but it has become a part of the new "normal."

                                                                              katie1
                                                                              Participant

                                                                                He takes only 10mg of Hydrocortisone in the am.  He sometimes takes an additional 5 mg in the afternoon if he is feeling any fatique. He feels really well on this dose. Initially they hoped his pituitary would recover the production of ACTH (as it did for the rest of his homrones).  However, it now looks like he's on replacement for the longer term. He takes no Florinef.  It would obviously be nice to not have this adrenal insufficiency but it has become a part of the new "normal."

                                                                                casagrayson
                                                                                Participant

                                                                                  I learned a long time ago that having to take a little hydrocortisone won't kill me, but an adrenal crisis just might!  My pituitary *finally* woke up after about 4 years, and I was able to get off replacements. There's hope yet!

                                                                                  casagrayson
                                                                                  Participant

                                                                                    I learned a long time ago that having to take a little hydrocortisone won't kill me, but an adrenal crisis just might!  My pituitary *finally* woke up after about 4 years, and I was able to get off replacements. There's hope yet!

                                                                                    casagrayson
                                                                                    Participant

                                                                                      I learned a long time ago that having to take a little hydrocortisone won't kill me, but an adrenal crisis just might!  My pituitary *finally* woke up after about 4 years, and I was able to get off replacements. There's hope yet!

                                                                                      katie1
                                                                                      Participant

                                                                                        Thanks for that! Taking the Hydrcortisone isn't a big deal and you arevright annadrenal crisis can kill you. The only real concern is that some trials have the use of  any systemic steroids as an exclusion.  Always looking at plan B or C…….

                                                                                        katie1
                                                                                        Participant

                                                                                          Thanks for that! Taking the Hydrcortisone isn't a big deal and you arevright annadrenal crisis can kill you. The only real concern is that some trials have the use of  any systemic steroids as an exclusion.  Always looking at plan B or C…….

                                                                                          katie1
                                                                                          Participant

                                                                                            Thanks for that! Taking the Hydrcortisone isn't a big deal and you arevright annadrenal crisis can kill you. The only real concern is that some trials have the use of  any systemic steroids as an exclusion.  Always looking at plan B or C…….

                                                                                            katie1
                                                                                            Participant

                                                                                              He takes only 10mg of Hydrocortisone in the am.  He sometimes takes an additional 5 mg in the afternoon if he is feeling any fatique. He feels really well on this dose. Initially they hoped his pituitary would recover the production of ACTH (as it did for the rest of his homrones).  However, it now looks like he's on replacement for the longer term. He takes no Florinef.  It would obviously be nice to not have this adrenal insufficiency but it has become a part of the new "normal."

                                                                                              casagrayson
                                                                                              Participant

                                                                                                If his a.m. cortisol levels are still really low, there's not much sense in doing the stim test.  It isn't always a very pleasant experience.  How much hydrocortisone is he on?  Is he feeling pretty good on the dosage?  Is he taking any flourinef?  

                                                                                                casagrayson
                                                                                                Participant

                                                                                                  This is what the Addison's site says about dental procedures:

                                                                                                  Major dental surgery           100mg hydrocortisone i/m             Double dose oral medication 
                                                                                                  eg. dental extraction             just before anaesthesia.               for 24 hours. Then return
                                                                                                  with general anaesthetic                                                                to normal dose
                                                                                                  Dental surgery                       Double dose (up to 20mg            Double dose oral medication
                                                                                                  eg. root canal work               hydrocortisone) one hour             for 24 hours. Then return 
                                                                                                  with local anaesthetic          prior to surgery.                               to normal dose
                                                                                                   
                                                                                                  Minor dental procedure       Not usually required.                     An extra dose only where 
                                                                                                  eg. replace filling                                                                             hypoadrenal symptoms
                                                                                                                                                                                                              occur afterwards.
                                                                                                   
                                                                                                  (The two columns are pre- and post-surgery.)
                                                                                                  casagrayson
                                                                                                  Participant

                                                                                                    This is what the Addison's site says about dental procedures:

                                                                                                    Major dental surgery           100mg hydrocortisone i/m             Double dose oral medication 
                                                                                                    eg. dental extraction             just before anaesthesia.               for 24 hours. Then return
                                                                                                    with general anaesthetic                                                                to normal dose
                                                                                                    Dental surgery                       Double dose (up to 20mg            Double dose oral medication
                                                                                                    eg. root canal work               hydrocortisone) one hour             for 24 hours. Then return 
                                                                                                    with local anaesthetic          prior to surgery.                               to normal dose
                                                                                                     
                                                                                                    Minor dental procedure       Not usually required.                     An extra dose only where 
                                                                                                    eg. replace filling                                                                             hypoadrenal symptoms
                                                                                                                                                                                                                occur afterwards.
                                                                                                     
                                                                                                    (The two columns are pre- and post-surgery.)
                                                                                                    casagrayson
                                                                                                    Participant

                                                                                                      This is what the Addison's site says about dental procedures:

                                                                                                      Major dental surgery           100mg hydrocortisone i/m             Double dose oral medication 
                                                                                                      eg. dental extraction             just before anaesthesia.               for 24 hours. Then return
                                                                                                      with general anaesthetic                                                                to normal dose
                                                                                                      Dental surgery                       Double dose (up to 20mg            Double dose oral medication
                                                                                                      eg. root canal work               hydrocortisone) one hour             for 24 hours. Then return 
                                                                                                      with local anaesthetic          prior to surgery.                               to normal dose
                                                                                                       
                                                                                                      Minor dental procedure       Not usually required.                     An extra dose only where 
                                                                                                      eg. replace filling                                                                             hypoadrenal symptoms
                                                                                                                                                                                                                  occur afterwards.
                                                                                                       
                                                                                                      (The two columns are pre- and post-surgery.)
                                                                                                      Tina D
                                                                                                      Participant

                                                                                                        Thank you guys! This is all very helpful information. Maybe I will end up needing an endocrinologist after all. Thanks so much for taking all the time to respond.

                                                                                                        Tina

                                                                                                        dellriol
                                                                                                        Participant

                                                                                                          I also wear a medilert  bracelet so that in case of any crisis the Drs. know give steroids.  I found on online that has a usb port.  I anything happens to me, an EMT can immediately have accest to my med history and medication list.  It also has a place for contact info so  they could call any of my doctors if necessary.

                                                                                                           

                                                                                                          jogo
                                                                                                          Participant

                                                                                                            Wow!  Thank you all for sharing your experiences.  My endo called at 5:00 PM  EDT today to ask how I was doing.  When I told her she woke me up from a 2+ hour nap, she said that I should go on 5 mg prednisone, 0.1 mg fludrocortisone, and 10 mg KCl each morning and wait 10 days for another blood test.  I will definitely talk to my dentist before I go in for the procedures.  Thank you!smiley

                                                                                                            jogo
                                                                                                            Participant

                                                                                                              Wow!  Thank you all for sharing your experiences.  My endo called at 5:00 PM  EDT today to ask how I was doing.  When I told her she woke me up from a 2+ hour nap, she said that I should go on 5 mg prednisone, 0.1 mg fludrocortisone, and 10 mg KCl each morning and wait 10 days for another blood test.  I will definitely talk to my dentist before I go in for the procedures.  Thank you!smiley

                                                                                                              jogo
                                                                                                              Participant

                                                                                                                Wow!  Thank you all for sharing your experiences.  My endo called at 5:00 PM  EDT today to ask how I was doing.  When I told her she woke me up from a 2+ hour nap, she said that I should go on 5 mg prednisone, 0.1 mg fludrocortisone, and 10 mg KCl each morning and wait 10 days for another blood test.  I will definitely talk to my dentist before I go in for the procedures.  Thank you!smiley

                                                                                                                dellriol
                                                                                                                Participant

                                                                                                                  I also wear a medilert  bracelet so that in case of any crisis the Drs. know give steroids.  I found on online that has a usb port.  I anything happens to me, an EMT can immediately have accest to my med history and medication list.  It also has a place for contact info so  they could call any of my doctors if necessary.

                                                                                                                   

                                                                                                                  dellriol
                                                                                                                  Participant

                                                                                                                    I also wear a medilert  bracelet so that in case of any crisis the Drs. know give steroids.  I found on online that has a usb port.  I anything happens to me, an EMT can immediately have accest to my med history and medication list.  It also has a place for contact info so  they could call any of my doctors if necessary.

                                                                                                                     

                                                                                                                    Tina D
                                                                                                                    Participant

                                                                                                                      Thank you guys! This is all very helpful information. Maybe I will end up needing an endocrinologist after all. Thanks so much for taking all the time to respond.

                                                                                                                      Tina

                                                                                                                      Tina D
                                                                                                                      Participant

                                                                                                                        Thank you guys! This is all very helpful information. Maybe I will end up needing an endocrinologist after all. Thanks so much for taking all the time to respond.

                                                                                                                        Tina

                                                                                                                        katie1
                                                                                                                        Participant

                                                                                                                          Dental work can definitely be a trigger that can cause a crisis.  You will likely need an increase in your dose (even if sedated) as there is a physiologic stress (and potential minor bacteremia) so just being sedated isn't likely enough (according to my husband's endocrinologist) for some dental procedures.  For a crown, he was advised to double his normal dose prior and if necessary add an additional dose in the afternoon if he felt any symptoms.  It is extremely important that dentists/doctors etc are aware of any issues of adrenal insufficiency.

                                                                                                                          He also carries specific instructions for medical intervention if he arrives at the ER (given to him by his endocrinologist).  He wears a medic alert bracelet and also has injectable steroids at home (in case of prolonged diarrhea etc).  He does produce some cortisol on his own but not enough. In his case, the assumption is that there has been damage to the pituitary from the Ipi and ACTH is not being produced.

                                                                                                                          I'm curious about the ACTH stimulation test.  My husband's endocrinologist has said his cortisol is just too low still to get any benefit from doing this test. He has routine blood work done (having held his Hydrocortisone) I'm curious if anyone has further information.

                                                                                                                          Kate

                                                                                                                          katie1
                                                                                                                          Participant

                                                                                                                            Dental work can definitely be a trigger that can cause a crisis.  You will likely need an increase in your dose (even if sedated) as there is a physiologic stress (and potential minor bacteremia) so just being sedated isn't likely enough (according to my husband's endocrinologist) for some dental procedures.  For a crown, he was advised to double his normal dose prior and if necessary add an additional dose in the afternoon if he felt any symptoms.  It is extremely important that dentists/doctors etc are aware of any issues of adrenal insufficiency.

                                                                                                                            He also carries specific instructions for medical intervention if he arrives at the ER (given to him by his endocrinologist).  He wears a medic alert bracelet and also has injectable steroids at home (in case of prolonged diarrhea etc).  He does produce some cortisol on his own but not enough. In his case, the assumption is that there has been damage to the pituitary from the Ipi and ACTH is not being produced.

                                                                                                                            I'm curious about the ACTH stimulation test.  My husband's endocrinologist has said his cortisol is just too low still to get any benefit from doing this test. He has routine blood work done (having held his Hydrocortisone) I'm curious if anyone has further information.

                                                                                                                            Kate

                                                                                                                      Viewing 8 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 byย MRF posting policies.

                                                                                                                      Popular Topics