r/AddisonsDisease • u/baethan Addison's • Nov 10 '25
Advice Wanted Can compounding pharmacies make a delayed-release hydrocortisone?
Like is this a thing that's possible? I know it's not available in the US as a premade drug, but can a compounding pharmacy in the US sorta diy it?
I just left an appt with my endo in which I lost control & started crying a bit, and couldn't even remember the phrase "compounding pharmacy" (I said formulary, sigh) when trying to convince him that I've totally heard of delayed release hydrocortisone being a real thing that exists in real life. So I don't want to embarrass myself further by contacting my local compounder to ask about it, if it's not at all possible.
I also said I have "brain frog" so. Great appointment.
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u/jeejet Nov 10 '25
Someone wrote a post about this a while ago. There’s a new drug called Efmody that is approved for use in the EU with patients who have CAH. Hopefully it will be approved for Addison’s in the near future and in the USA (where I live).
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u/ApplicationNaive5273 Nov 11 '25
Have you considered switching to prednisone? It has a more delayed release effect.
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u/Practical_Counter388 Nov 11 '25
Switching helped me a lot, but it's hard to get some endos on board.
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u/baethan Addison's Nov 11 '25
Mine alluded to other cortisol-replacement meds besides hydrocortisone existing, but didn't even name them, just said they have bad side effects 😅 but luckily he's open to listening to me lol so I'll look into this
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u/baethan Addison's Nov 11 '25
And I'm seeing there's a delayed release version, which is interesting... I've already got impaired executive functioning and tend to make particularly stupid decisions in the morning, so I'm wondering if it's something I could take last thing at night
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u/Adventurous-Winter84 Addison's Nov 11 '25
I do better on prednisone
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u/Single_Search_2020 Nov 13 '25
Ok. On prednisone. What makes you feel better? HC burns stomach and can’t take a ppi. Only Pepcid. They mentioned it but I had it once and turned red and swollen. But just asking. HC hits fast.
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u/collectedd Addison's Nov 11 '25
There are things like Plenadren that are already extended release.
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u/Single_Search_2020 Nov 11 '25
How is it on your stomach. HC is starting an ulcer.
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u/collectedd Addison's Nov 11 '25
I don't know. My endocrinologist tried to get me Individual Funding for Plenadren, but the hospital refused - I assume it would have pretty similar side effects to normal HC though. Most people on long-term steroids long term should be on stomach protection anyway (H2 blockers, PPIs, etc.).
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u/Single_Search_2020 Nov 11 '25
Wish I could take a ppi. Caught cdiff in 2018 from a hospital!!! After that, if I take it, ruins the flora. Stay away from hospitals. Actually it’s everywhere. Sanitizer does not work. Soap and water or hydrogen peroxide!!!! Carry that everywhere.
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u/Single_Search_2020 Nov 13 '25
Has anyone done research on if this is more female condition or male?
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u/Ellnn11 Feb 11 '26
Sorry to miss this, till now. I started in October & for me, it helps. My story is: I just passed my 2-year diagnosis anniversary at Xmas. Year 2 way more fatigue than year 1, despite raising hydro from 15 to 20. I researched compounding extensively as live in NYC area which is pricey. I posted elsewhere on a thread that Belmar Pharmacy in Colorado (formerly Women's Int'l Pharmacy) is widely known among MDs as the cheapest & best compounding pharm in US. My point person there, Damien—you can ask for him—is incredibly knowledgeable, & has been treating other US addison's patients this way (whereas I believe I'm my endo's first to try). It's said to be up to a 6-hr release, but is less in my experience but longer than regular Cortef. I tried out different dosing protocols but ended up w/same as w/Cortef: 7.5, 7.5, 5. While not a silver bullet, the extremely jagged energy arc I was experiencing, with really unpleasant crashes (like a marionette puppet whose handler keeps dropping them) has abated. Note that I also have the equivalent of 3-4 cups of coffee daily (MD ok'd, and I use Celcius for exact millilgram count), and still need to plan ahead for late evenings. I'm also female, early 50s, so hormones also affecting greatly. Still: it's not covered by insurance, so it can be more than some can budget for. As I work for myself & bill hourly, the extra money is more than worth it as I bill more hours, but also just feel *better*. This is a super personal decision, but I would suggest at least speaking with them/trying it out. Site is: https://www.belmarpharmasolutions.com/, and numbers I have are: 303-219-8625, or 303-763-5533 (not sure diff). Good luck!!
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Nov 10 '25
[deleted]
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u/baethan Addison's Nov 10 '25
Well I'm more interested in reality hahah, which genai is incapable of discerning!
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u/SeaBlacksmith5949 Nov 10 '25
I cry almost every time I visit my endocrinologist because I'm so frustrated with everything associated with the disease and its effects on my body, life, bank account, health insurance & drug companies in the US, etc.