Has Anyone Developed Addison's Disease from Keytruda?

Hello I too have had awful experience with keytruda I was diagnosed in the fall 2023 did 3 months of carbon taxol and keytruda after my last dose January 9th2024 I tested positive at home with Covid but my only symptom was a bad headache after a couple of weeks no chemotherapy I wound up on n the hospital with a horrible rash swollen face in ICU And developed myocarditis still waiting to have my surgery was supposed to have a double mastectomy but also too they don’t want me on the table so I’m having a lump ectomy right now. It’s scheduled for Wednesday this coming week but it’s been rescheduled already three times been dealing with steroids at a high dose because my liver hasn’t been functioning as well. I’ve been wondering if anyone else has been dealing with this as well. It’s definitely not been easy.

Hi Rebecca. First. Best wishes for your upcoming surgery. We do have some of the same Keytruda effects. I, too, am on daily high doses steroids for life. Because Keytruda damaged my adrenal gland, I get adrenal "crisis" (attacks), which are brought on by stress. Internal and external stresses. The headaches are quite bad, but you said you got them from COVID. I have to manage the effects daily. You are not alone. I will be thinking of you on Wed. You have been through a lot, so you are strong. I like to think of us as warriors.💐

Thank you for sharing I really appreciate knowing I’m not alone it’s been really hard!!!!

I'm always here to talk. I understand. You go through treatment, and then there are lifetime issues to deal with. Let me know how your surgery goes. On the lighter side, I always say that cancer is the gift that keeps on giving. You will do great!

🙏🙏🙏🙏

Hey Rebecca! Cking in to see how your lumpectomy went. I'm thinking of you! ❤️

Cking back on you. ❤️

I have been on Keytruda since Feb 2024 and will be until Feb 2025. I haven’t had any side effects from it yet - knock on wood. Our bodies are all so different, it’s hard to know what these drugs will do. Sending best thoughts to both of you and I’m so sorry for the damage you’ve had to endure!

Thank you, Sarah. Be well. Sounds like you've got this💐

Keytruda and other immunotherapy treatments can sometimes cause autoimmune side effects, including adrenal insufficiency, so your experience with developing this condition is a recognized potential complication that oncology teams monitor for. Managing treatment decisions around immunotherapy side effects can be complex, and it sounds like your care team is working to balance your cancer treatment with managing these serious effects. Hopefully others in this community who have experienced similar autoimmune complications from immunotherapy will share their experiences and management strategies with you.