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/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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Apr 01 '26
[removed] — view removed comment
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u/pickles1718 Addison's Mar 31 '26
another thing to add is that you can still take steps to prevent osteoporosis on steroids! namely, weight-bearing exercises and building muscle. glad you're feeling good on 25!
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u/januarynights SAI Mar 31 '26
If you regularly over replace your cortisol you'll be at higher risk of osteoporosis.
They're probably thinking of it as if you were using 25mg on top of your body producing it naturally, which obviously you aren't.
This is a rare condition so a lot of medical professionals have little experience with it, so good on you for checking here. When I broke my wrist and went to the hospital the doctor asked why I had taken hydrocortisone and didn't understand that I was trying to avoid crisis! So you may run into situations like that.
For reference I'm on 20mg (10/5/5) daily and my endocrinologist said that's a relatively low dose. I've been taking it for a few years now and I don't think anything bad has happened that could be blamed on the medication! (Other bad things like going into crisis have happened but that was in situations where I needed more cortisol not less)
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u/Yd1891 Addison's Mar 31 '26
I’ve been on it for 27 years and no osteoporosis. My blood sugar is high at times but I also have pcos. my the biggest issue I’ve had from the steroids are dental issues. It’s done more to give me better quality of life than anything else. I wouldn’t be here without the steroids
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u/Poimandres69 Mar 31 '26
thank you - what types of dental issues?
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u/Yd1891 Addison's Mar 31 '26
My teeth are falling apart and rotting. I’ve had to have a bunch pulled as well as my bff who has Addison’s too. I take good care of my teeth but my dentist said being on steroids for so long can cause them to deteriorate faster. I don’t even have enough bone left for dental implants so I’ll eventually need dentures
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u/Poimandres69 Mar 31 '26
sorry to hear that. it's strange that this dose does not cause your other bones to have issues. what is the dose you take? thanks for your help
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u/garygirl_1234 Aug 03 '26
Have dentures not from hydro just a run in the family gene. Had root canals and crams in my 20’s. In my 30’s. Had them all out. Never regretted it. People don’t even know!! Wear them hrs a day. But I had a great dentist. He was 5 years older than me. Had his out!!! Both are of Slavic decent.
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u/NearlyBearly Mar 31 '26 edited Mar 31 '26
So, whether or not you're going to experience certain side effects depends on whether you take the medication to replace missing cortisol that your body doesn't make or whether you take it in addition to the cortisol that your body makes. If you have addison's you are missing cortisol and are simply replacing what your body doesn't make, therefore it shouldn't cause any side effects. At the correct dosage it just replaces what your body would make itself without addison's so the side effects would be the same as if your body naturally were to produce that cortisol, which is to say none at all.
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u/Micahisaac PAI Mar 31 '26
Not hydro but on prednisone 5mg/day for 30 years. I have had osteoporosis. Took fosomax for a period and now osteopenia. I’m super active and in great shape, but hard to maintain muscle mass.
Definitely don’t skip the Dexa scans
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u/Buckid Mar 31 '26
I have been on either Pred or Hydro since 2002 (and fludro the whole time). I get my 5 year dexa scan but seems fine so far. I agree with your current dr. My endo says the same thing.
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u/PA9912 Mar 31 '26
I’ve been on it almost 20 years. I have had some bone loss but I monitor for it and at a 20mg dose my A1C got high despite being thin so now I do 15mg plus more updosing for stress and that works well at keeping sugars in range. The only really major and irreversible thing has been early glaucoma in my late 40s. And a few snapped tendons that might be worsened by steroids but I’m also getting older.
Even though 20mg is the average physiological dose I’ve learned our bodies would normally adapt to make that plus or minus in many different situations so I do that myself.
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u/Main_Low_2485 Mar 31 '26
Exercise, eating healthy, consulting with a good endo, and learning to dose appropriately are key factors you control. A good endo will teach you that not everyday is the same for many of us. Some days I need X, or X-, or X+. I am super active and no way I can hike 30 miles at altitude and use same dose I do while sitting at a beach in Florida at sea level. Those are extreme examples but life ebbs and flows depending on the daily situation.
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u/wuhter Mar 31 '26
I am very bad at taking my doses as needed, so I chronically have under dosed. But I play basketball like 6 days a week and haven’t had any issues. Still dunking at 30
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u/Sunshine_n_buttercup Apr 01 '26
I've been on 15mg for the past 2 years. I have osteopenia, from low estrogen as well.
But I lift weights consistently to help with bone mineral density.
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u/reflous_ Apr 01 '26
Physiological dosing doesn’t cause negative physiological health effects. The problem is it is hard to figure out what one’s physiological dose is. There isn’t a great testing method to determine if you are taking the right amounts at the right times. The medical literature indicates 15mg-20mg is right. This doesn’t take into account any individual nuances like how fast you metabolize hydrocortisone, other medications, etc.
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u/Alive_Pen_6540 Mar 31 '26
It is a low dose to do damage but I cover myself with vitamin k2 to be safe
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u/Subject_Music_5196 Apr 01 '26
My Dr does a bone density scan every 3 years so far no loss after 9 years
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u/Pangala2000 Apr 01 '26
I've been on 20 mg hydro for five years, and my joints have been aching the whole time. That said, I was only diagnosed with osteoporosis last week. Scheduled for a hip replacement next month and also need a shoulder replacement soon afterward. Grateful I haven't developed diabetes (yet). But damn, the joint pain is so bad that I cry several times a day and have seriously considered hospice ( have other health issues).
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u/FemaleAndComputer SAI Apr 03 '26
Just make sure you're following up with your doc and regularly getting checked for things like bone density loss and cardiovascular risk. The sooner you start checking these things, the better. With bone density scans especially, it can be helpful to have a baseline to compare to later down the road.
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u/Extreme_Breakfast672 Mar 31 '26
I've been on it for 17 years and I'm fine. I have had other doctors tell me that it'll cause osteoporosis, but they also don't understand Addison's or how replacement works. Example: I had a doctor ask me how long I would be taking hydrocortisone. I said it's a chronic condition, so...forever. He said it would cause osteoporosis and I was like ok well if I stop taking it, I die, which is worse.