› Forums › General Melanoma Community › Keytruda – Adrenal Insufficiency
- This topic has 4 replies, 3 voices, and was last updated 5 years, 11 months ago by
marta010.
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- May 23, 2018 at 1:10 pm
Hi all – just wondered if those of you who experienced adrenal insufficiency as a side effect of Keytruda ever considered taking a stress dose of steroids in conjunction with the infusion to counter the potential of adrenal insufficieny. My husband has had several bouts of adrenal insuffciency over the past many years and has been on hydrocortisone replacement therapy (20mg daily) during this time. He ended up in the hospital this weekend again the same situation after his 2nd Keytruda infusion. He is tapering off the high dose he was on in the hospital and will be on a new maintenace/replacement dose of 30mg daily to provide some additional relief as he resumes Keytruda infusions. One of the docs suggested that he increase his hydrocortisone dose on the weeks he has his infusions (3 x normal for 3 days/2 x normal for 3 days) – not sure if any of you have done this. Also curious how long of a break you may have taken when experienceing adrenal insufficiency – we're delaying his next infusion by 2 weeks to see how his cortisol levels react. Thanks for your input.
Ann
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- May 23, 2018 at 2:23 pm
Hi Ann,
Sorry for what you and your husband are dealing with. I did not experience adrenal or other endocrine issues during my trial of Nivolumab (Opdivo), so others here may be able to provide a more personal experience. However, from my study over the years, the data suggests that while patients may need prednisone, drug holidays, etc, to ameliorate side effects like joint pain, pneumonitis (inflammation in the lung), colitis (inflammation in the gut)…with said interventions those folks can usually get better and move on. Endocrine side effects (like adrenal insufficiency, diabetes, hypothyroidism) tend to be more permanent necessitating life long hormone replacement therapy and monitoring to make sure repacement dosage is keeping the patient stable. Here is a post I put up that includes an algorithm for treatment of endocrine side effects (the slides I posted are a little hard to read, but there is a link to the entire article):
Don't know it this really gives you any info you didn't already know, but… I wish you both my best. Celeste
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- May 23, 2018 at 4:57 pm
Thanks, Celeste – I do recall reading that article when you first posted and found it very helpful. We've been around this bend before with the adrenal issues so I should have recognized the symptoms before it got out of hand! We were surprised that they kept him in the hospital for 2 1/2 days for this since they were ready to release him from brain surgery after 24 hours! Go figure…
We'll take a break for a couple of weeks from the Keytruda and also have a brain MRI scheduled to make sure Larry's not having another brain edema issue since his last craniotomy and gamma knife were in Mar/April. I'm pretty sure his brain is fine (relatively!) but would be good to confirm before we head back in for the next infusion.
Ann
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- May 24, 2018 at 5:46 pm
Sorry to hear about this. I hope it gets better and I especially hope Keytruda is working!
Have you considered a low dose of prednisone (e.g. 5mg in AM and 2.5mg in PM) instead of hydrocortisone? Prednisone is longer lasting than hydrocortisone and so it may keep him from dropping so quickly.
i have adrenal insufficiency from hypophysitis (pituitary swelling) while previously taking ipilimumab. Later I had 7 infusions of Keytruda but did not experience any endrocrine side effects from Keytruda. I’m 14 months past having hypophysitis and just two months ago my pituitary started properly regulating my thyroid again (TSH is now at the midpoint of normal). My cortisol is still suppressed so I continue taking hydrocortisone and probably will for life. I see a good endocrinologist, who is familiar with immunotherapy side effects, every 3 months or more frequently if something happens.
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- May 24, 2018 at 6:57 pm
Hi – thanks for your input. He has regular appointments with an endocrinologist for th epast several years and, for the most part, has fine tuned the cortisol levels. Like you, the adrenal insufficiency first surfaced 4 or 5 years ago whil taking ipi and intermittently while on dabrafenib and /or Keytruda more recently. Predinosone has never come up as an alternative – probably due to the relative long periods of stability and the quick recovery when he has had extreme insufficiency situations. Hope you're doing well.
Ann
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