prednisone, low cortisol,stress dose anyone??

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.

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.

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.

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!

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!

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!

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

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

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

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

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

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

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?  

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?  

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?  

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."

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."

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."

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!

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!

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!

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…….

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…….

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…….

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

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

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

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.

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.

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.

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!

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!

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!