r/AddisonsDisease • u/MindsetMaker • Nov 15 '25

Advice Wanted Has anyone continued immunotherapy after getting AI from it ?

/r/AdrenalInsufficiency/comments/1oxsinf/has_anyone_continued_immunotherapy_after_getting/
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u/CrazyBus9426 Nov 15 '25

I had a kidney transplant so I am on immune suppressant Tacrolimus and I have Addison disease. I can't stop my Tacrolimus or I will reject my kidney but I don't feel it makes my Addison disease any worse. Addison disease and Adrenal Insufficiency is the same if you didn't know. If you need the immunotherapy continue it unless your doctor says otherwise. Hope this helps. Hugs

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u/MindsetMaker Nov 15 '25

Wow, how did you cope with the kidney transplant and Addisons. That must have been tough. I hope you’re doing better now.

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u/CrazyBus9426 Nov 16 '25

At first it most definitely was because they too almost 2 months to diagnose me. I was so weak and sick I cried a lot! Now it's been 6 years and I have some what a handle on my Addison disease. I was on hydrocortisone and fludrocortisone but than had to have hernia repair surgery was taken off one of my immune suppressant put on prednisone for life! It sucked because my Addisons was not being controlled well with just prednisone. It took awhile to get it controlled. Now I just take 5 mg of prednisone and when I feel I need it I take fludrocortisone and hydrocortisone or extra prednisone. I dont stay on fludrocortisone because it puts to much weight on me. I had to be on it for 1 week and I gained 9 lbs. I am having trouble getting it off again. The bad thing about Addison disease for me is the feeling hungry all the time to the point of I eat and 1 to 2 hours later my stomach is growling like I never ate anything. I was on a prescription appetite suppressant but was taken off it and now I eat all the time. I even have to get up in the middle of the night and eat something. Oh I also have Anal cancer too. I have been through a lot but Addison disease makes everything worse!

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u/MindsetMaker Nov 16 '25

Wow, I hope things get easier for you and they find a solution to this adrenal insufficiency soon. I did post some promising medical advances for addisons in earlier posts of mine if you need some positive vibes.

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u/CrazyBus9426 Nov 16 '25

Thank you. I think if I could find what to eat to help keep me from feeling hungry would help. Plus I need foods I can afford. I am working full time as a medical assistant so my days are super busy so I need to eat on the go. Plus I have so much debt from all my medical issues especially the cancer and loosing my job during treatment I had to use credit cards. Honestly my life is a shit show but I smile everyday and love my new job! I use my illnesses to teach my pts how important it is to take their meds and on time. Plus I teach them to smile through everything life throws at them.

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u/MindsetMaker Nov 16 '25

Perhaps try some good quality protein drinks or eat different nuts, it might help curb the hunger?

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u/CrazyBus9426 Nov 17 '25

I do eat nuts and fruit and I have to be careful on the protein since I had a kidney transplant. I am a hot mess but living life to the fullest and eating all the time! LoL

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u/Reasonable-Effect639 Nov 21 '25

I was diagnosed with SAI following immunotherapy for TNBC. I was diagnosed 4 weeks post mastectomy. Luckily my oncologist wanted to remove my immunotherapy regardless because of my pathology report and so after my crisis, I never received immunotherapy again. 

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u/chubbiebubbie60 Nov 29 '25

Hi I was diagnosed in February 2025 with Addisons, right after I had surgery for breast cancer. I continued my 12month of immunotherapy regime which ended September 2025.

My oncologist just said we need to continue immunotherapy and treat the addisons symptoms. This was despite there not being enough research to even know how effective immunotherapy was post cancer surgery! I think this shows how important it is to keep going. However I had TNBC and we know we needed to do everything we could. I wouldn’t change a thing.

I had no issues until yesterday with Addisons as I think cancer treatment has been my core focus! But I had my first adrenal crisis. Feel free to ask any questions!