Adrenal Insufficiency.

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6/4/2014 1:22am
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Replies: 2

One year NED as of D-day (June 6th).  Ipilimumab (3 mg/kg body weight) was stopped after second infusion in clinical trial E1609 due to an irAE that was off the charts.  Inflammatory ulcerative colitis seems to have been taken care of thanks to 2 infusions of infleximab (Remicade).  Still careful about diet.  Still waiting for hair to grow back.  Now I'm told that while the MRI did not show hypophisitis, I do have AI, adrenal insufficiency.  My Medic Alert medallion now will have to be the size of a hub cap.  I have anaphylaxis to peanuts and all tree nuts and their oils.  I will have to add information about my adrenal insufficiency.  This is important in an ER situation. I obviously need information and instruction on how to deal with this new development.  Florinef, prednisone, and epi-pens, oh my!  One NED day at a time sounds good to me.

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Tina D - (6/6/2014 - 10:48am)

Congratulations on your 1 year NED! I also have adrenal insuf. Just saw an endocrinologist who gave me lots of helpful info on how to "stress dose". Your endo should have similar info for you. Mine was also sue to ipi. Am havingan adrenal stimulation test end of June to further evaluate. Remain on 5 mg prednisone currently.

I agree... one day at a time and manage the side effects with continued gratitude for neing alive :-)

Tina

jogo - (6/8/2014 - 6:49pm)

Thanks Tina.  While dealing with ipi induced ulcerative colitis in the hospital, I developed orthostatic hypotension (allegedly from the massive doses of prednisone 100 mg).  In the hospital, I was given Florinef 0.1 mg b.i.d. to deal with the adrenal inactivity.  Back home, when I was down to 5 mg prednisone, I had the ACTH test.   My adrenal glands produced cortisol and so my endo took me off the prednisone and the prednisone.  A few days later, I was exhausted by the afternoon.  My endo put me back on the 5 mg prednisone and 0.1 mg florinef both once a day.  She wants to get me off the prednisone and florinef will do do another wait and see in September.  Massive wedding in July with in-law family whom I haven't seen in years.  My husband has told me he intends to tell them about my adventures with metastatic melanoma.  I will talk to my endo on how to stress dose ASAP.  I am so thankful for every day.

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