Post Immunotherapy – Hypophysitis / Adrenal Insufficiency

Juan,

That sounds to me like you are heading to adrenal crisis.  Feels kinda like you have the flu, right?  I'd probably up the hydrocortisone (maybe to 25/10, or even 25/10/5) and see if you feel better.  A full-blown crisis will typically result in severe diarrhea, vomiting, fuzzy thinking, and eventually unconsciousness.  You don't want to go there!  The symptoms you describe are the way adrenal patients feel when they wean from one dose to another — trouble is, you aren't supposed to be weaning!  The other choice is to just try to ride these symptoms out to see if your adrenals recover enough to produce more cortisol; just make sure you don't start the slide into crisis.  

FYI, if the doctor didn't tell you this:  
If you start vomiting or have diarrhea, take an additional 20mg of hydro.  If you don't keep it down, or symptoms don't abate, take another 20mg of hydro.  If that doesn't work, use your emergency injectable (you DO have one, don't you?) and get to the ER.   *Never* take the injectable and stay home waiting for it to work — you will need additional solu-cortef and fluid support to balance your electrolytes.

Juan,

That sounds to me like you are heading to adrenal crisis.  Feels kinda like you have the flu, right?  I'd probably up the hydrocortisone (maybe to 25/10, or even 25/10/5) and see if you feel better.  A full-blown crisis will typically result in severe diarrhea, vomiting, fuzzy thinking, and eventually unconsciousness.  You don't want to go there!  The symptoms you describe are the way adrenal patients feel when they wean from one dose to another — trouble is, you aren't supposed to be weaning!  The other choice is to just try to ride these symptoms out to see if your adrenals recover enough to produce more cortisol; just make sure you don't start the slide into crisis.  

FYI, if the doctor didn't tell you this:  
If you start vomiting or have diarrhea, take an additional 20mg of hydro.  If you don't keep it down, or symptoms don't abate, take another 20mg of hydro.  If that doesn't work, use your emergency injectable (you DO have one, don't you?) and get to the ER.   *Never* take the injectable and stay home waiting for it to work — you will need additional solu-cortef and fluid support to balance your electrolytes.

Juan,

That sounds to me like you are heading to adrenal crisis.  Feels kinda like you have the flu, right?  I'd probably up the hydrocortisone (maybe to 25/10, or even 25/10/5) and see if you feel better.  A full-blown crisis will typically result in severe diarrhea, vomiting, fuzzy thinking, and eventually unconsciousness.  You don't want to go there!  The symptoms you describe are the way adrenal patients feel when they wean from one dose to another — trouble is, you aren't supposed to be weaning!  The other choice is to just try to ride these symptoms out to see if your adrenals recover enough to produce more cortisol; just make sure you don't start the slide into crisis.  

FYI, if the doctor didn't tell you this:  
If you start vomiting or have diarrhea, take an additional 20mg of hydro.  If you don't keep it down, or symptoms don't abate, take another 20mg of hydro.  If that doesn't work, use your emergency injectable (you DO have one, don't you?) and get to the ER.   *Never* take the injectable and stay home waiting for it to work — you will need additional solu-cortef and fluid support to balance your electrolytes.

Oh, another thing.  The 10mg of prednisone that you were on is equal to 40mg of hydrocortisone.  That's probably why you aren't feeling as well as you were before.  

Oh, another thing.  The 10mg of prednisone that you were on is equal to 40mg of hydrocortisone.  That's probably why you aren't feeling as well as you were before.  

Unfortunately, there is no epi-type pen.  Just the ridiculously huge syringe and the vial.  😉  My suggestion would be to get someone in your household trained to inject you.  Something else to know … most states will not allow EMTs to inject a patient's emergency meds.  The Addison's Patient Groups are working to get than changed.

You shouldn't develop any issues from the steroids, because all you are doing is replacing the physiological dose that your body would normally be producing.  Watch out for these symptoms:  central weight gain, insomnia, thinning skin, facial flushing, and a "moon face".  These would indicate that your pituitary is recovering and you might need to reduce your hydro dosage or stop it completely.

 

Unfortunately, there is no epi-type pen.  Just the ridiculously huge syringe and the vial.  😉  My suggestion would be to get someone in your household trained to inject you.  Something else to know … most states will not allow EMTs to inject a patient's emergency meds.  The Addison's Patient Groups are working to get than changed.

You shouldn't develop any issues from the steroids, because all you are doing is replacing the physiological dose that your body would normally be producing.  Watch out for these symptoms:  central weight gain, insomnia, thinning skin, facial flushing, and a "moon face".  These would indicate that your pituitary is recovering and you might need to reduce your hydro dosage or stop it completely.

 

Unfortunately, there is no epi-type pen.  Just the ridiculously huge syringe and the vial.  😉  My suggestion would be to get someone in your household trained to inject you.  Something else to know … most states will not allow EMTs to inject a patient's emergency meds.  The Addison's Patient Groups are working to get than changed.

You shouldn't develop any issues from the steroids, because all you are doing is replacing the physiological dose that your body would normally be producing.  Watch out for these symptoms:  central weight gain, insomnia, thinning skin, facial flushing, and a "moon face".  These would indicate that your pituitary is recovering and you might need to reduce your hydro dosage or stop it completely.

 

Oh, another thing.  The 10mg of prednisone that you were on is equal to 40mg of hydrocortisone.  That's probably why you aren't feeling as well as you were before.  

Juan,   Were you able to figure out your dosing so that you could ride again?  I, too, am a cyclist.  I had 4 cycles of Opdivo/Yervoy in 2016.  I develeoped adrenal insufficiency and was put on 7.5 mg of prednisone.  I find when I ride, I have no power in my legs, get cramps in my quads, get dizzy and confused on long hard rides.  I also have little appetite, chills, joint pain and it takes days for me to recover enough to ride again.  I am happy to be alive, but miss being able to do long hard rides.  Have  you figured anything out?  Nice to find a fellow cyclist with this condition.   

Thanks,

Steve

I am having a lot of side affects from my Mavis Study clinical trial called Polynoma 103A from Polynoma. Going into year two of vaccine injections. Finally after one year saw my blood and urinalysis. I am supposed to be in a double blind study but because of the side affects being so obvious my oncologist is monitoring me closely. I have an extremely low cortisol levels. Just found out now after one year! no wonder I feel awful and exhausted. My joint pain is insane whether I sit or play a hard game of tennis ( which later fatigues me) It is at a dangerously low level. I have been blaming the vaccine ingredients when all along its been the adverse reactions. My blood glucose is really high as well which can bring on type 1 diabetes. etc. what I do like to know was did you tell the doctor your cortisol levels were affecting you or did he take preventative measures to intervene. I am afraid they will knock me out of the study but have adrenal failure and hypopituitarism is not healthy at all. I have every miserable symptoms of this endocrine adverse reaction and feel like crap. My cognitive skills are not functioning either.

Thanks for the info Moria.  As best I can tell plenadren is further along in Europe than in the US.  Not sure if it's approved here or not.  Do you know if it's still considered a steriod.  Believe it or not I've already run into some difficulty with a trial due to my 5mg – 7.5 mg daily dose of prednisone.  Would be nice if there was a way around it.

Thanks for the info Moria.  As best I can tell plenadren is further along in Europe than in the US.  Not sure if it's approved here or not.  Do you know if it's still considered a steriod.  Believe it or not I've already run into some difficulty with a trial due to my 5mg – 7.5 mg daily dose of prednisone.  Would be nice if there was a way around it.

Thanks for the info Moria.  As best I can tell plenadren is further along in Europe than in the US.  Not sure if it's approved here or not.  Do you know if it's still considered a steriod.  Believe it or not I've already run into some difficulty with a trial due to my 5mg – 7.5 mg daily dose of prednisone.  Would be nice if there was a way around it.

I am afraid plenadren is still a steroid.

Do you think the exclusion from the trial is becuse you are taking steroids or because you have adrenal insuffiency and they are worried about a crisis or further damage?

If it is really because you are 'takig steroids' a statement from an endocrinologist that you on a replacement dose ,and therefore have no more cortisol in your system than anyone else, may help.

I am afraid plenadren is still a steroid.

Do you think the exclusion from the trial is becuse you are taking steroids or because you have adrenal insuffiency and they are worried about a crisis or further damage?

If it is really because you are 'takig steroids' a statement from an endocrinologist that you on a replacement dose ,and therefore have no more cortisol in your system than anyone else, may help.

I am afraid plenadren is still a steroid.

Do you think the exclusion from the trial is becuse you are taking steroids or because you have adrenal insuffiency and they are worried about a crisis or further damage?

If it is really because you are 'takig steroids' a statement from an endocrinologist that you on a replacement dose ,and therefore have no more cortisol in your system than anyone else, may help.