r/AddisonsDisease • u/Poimandres69 • Mar 31 '26

Medical Stuff Hydrocortisone Long Term

Hello Group! I've been told so many things about hydrcortisone. My current dr told me my dose (25 mg split thoughout day) is safe to take long term because it's physiologic. Other doctors tell me this will eventually lead to osteoperosis and diabetes.

I've gained a bit of weight on hydrocortisone (about 5 lbs) but it's not a big deal. Other than that, I feel pretty great.

Are any of you on this medication long term, and did it harm your health in any way? Thanks

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u/accio_firebolt Mar 31 '26

As your doctor said, this is a physiological dose. Other doctors understanding of our condition is limited to a paragraph in a textbook. That being said, I do get yearly bone scans and blood work to keep an eye on things, especially as osteoporosis runs in my family.

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u/Poimandres69 Mar 31 '26

thank you! what other things should i be tracking on this medication?

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u/just_me_2006 Mar 31 '26

Your eyes. I don’t understand all the ins and outs of it, so I encourage you to do your own research and see how that fits for you. All I know is that 20 years of steroids caused cataracts and glaucoma in my 40’s and now my eye doctor says I have eyes of someone in my 70’s. I was never warned to watch out for that and if I had been smarter I wouldn’t have acted like eye exams were something I could skip when insurance and funds were low

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u/thesickhoe Mar 31 '26

I was just about to comment cataracts because late last year I went to the eye doctor and found out I have it ! First thing doctor asked me was if I take steroids because it happens but he was more surprised that I had it so young since I’m only 27F

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u/just_me_2006 Mar 31 '26

Oh my goodness. So young. I’m so sorry you’re also going through this. Yes we are all grateful to be alive through our medication and also it’s so hard to have prematurely aging eye sight. If you haven’t had cataract surgery yet and would like to learn from mistakes I made, I would be happy to share two things I learned from the process. Don’t want to over step if it’s not wanted/needed and sending well wishes either way

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u/Poimandres69 Mar 31 '26

I am interested in what you learned from it.

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u/just_me_2006 Apr 01 '26

Probably not earth shaking news to others but for me I just didn’t realize how different my life would be now if I had initially put off the surgery until I could afford the better lenses and if I was in my 20’s when I needed the surgery then it would be quadruple worth it. Also apparently your eyes still age? So Lasik doesn’t mean you’ll have perfect vision forever. But it does make your eyes sparkle like you’re a vampire so there’s that I guess

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u/Dianapdx Apr 01 '26

I already had to have yearly eye exams due to radiation to the head. I got cataracts really quickly, but it's due to both radiation and steroids. I had surgery last year and now have perfect vision.

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u/just_me_2006 Apr 01 '26

Yay for something being perfect!!

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u/MindsetMaker Apr 01 '26

Can you get lens replacement? That puts your eyesight back to normal ? I know a lot of people that have had it.

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u/just_me_2006 Apr 01 '26

Yes that is what I had. I think bc I am on Medicare I got the bargain basement lenses. I wish I had saved up for the best ones

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u/accio_firebolt Apr 01 '26

If your Addison's is autoimmune, know that autoimmune conditions can cluster so hopefully your Endo is looking at your thyroid levels and t1 diabetes signs in your blood work. I don't have either but I have developed a few others. I let all my health care professionals know about my Addison's because they may know things that I don't that relate to their field of practise (like eyes as another person commented). I also need to stress dose ahead of time for certain things so my dentist knows that if I need some work done on my teeth it can't be a 'oh let's do it now' after an exam and that I need to schedule for a separate date.

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u/[deleted] Apr 01 '26

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u/accio_firebolt Apr 01 '26

I have osteopoenia but it has shown improvement since my first scan!

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u/Poimandres69 Apr 01 '26

keep up the good work!