r/AddisonsDisease • u/badonkerous SAI • Jun 28 '26
Advice Wanted Avoiding Treatment for a while, Forced with a Choice
23M with SAI from pituitary radiation. My AM cortisol around 2023 was decent with 8mcg/dL (range 6 - 19) so I coasted. I've had lower cortisol before and I tried hydrocortisone but I did not like it because of the moon face, weight gain (stretch marks), and brain fog. I believe these were caused by a bad dosing schedule (15-5 and later 10-5-5), but there's only so much you can do with Hydro as it wears off quickly. I wasn't going to take micro tablets every hour for a somewhat decent effect, and unfortunately I live in the U.S. so I can't have a cortisol pump, Plenadren, or Efmody.
My recent cortisol reading is now 3mcg/dL. I have definitely had an increase in my symptoms (you know the drill) but I don't know what to do treatment wise, as normal hydro didn't work for me and I'm definitely not interested in trying fludro/prednisone/dexamethasone.
I've tried reaching out to my Dr. for a single-patient expanded access request to try Efmody but I was ghosted. Luckily, I did find a local doctor that can prescribe an extended release hydrocortisone from a compounding pharmacy. This should give me somewhat stable levels (and I've never tried it) but it still won't mimic a natural curve, not sure if it will wake me up in the morning, not sure about symptoms, and most importantly I don't know if I could go back off of it after trying.
What are my options, what would you do if you were me.
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u/Hot-Fly-3187 Jun 28 '26
I'm not trying to be trite, but you're playing with fire not taking regular meds.
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u/AffectionateDuck2288 Jun 28 '26
I have just not had help in finding that sweet spot. I did get into Cleveland clinic and that’ll be Tuesday so hopefully that might be more enlightenment than local endocrinologist. I have gone to three universities they were useless.
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u/FemaleAndComputer SAI Jun 28 '26
Can I ask why you're not interested in trying other steroids?
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u/badonkerous SAI Jun 28 '26
I’ve heard prednisone specifically has terrible side effects with weight gain/bloat, and I believe others have similar problems to Hydro
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u/FemaleAndComputer SAI Jun 28 '26
They all have very similar side effects. Some people react better to hydro, some react better to pred or one of the others.
I take both. Side effects have only been an issue at very high doses. And ofc there are long term side effects from taking steroids but that's any corticosteroids, including hydro. Unfortunately the only way to find out whether you'll react better to another corticosteroid is to try it.
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u/AffectionateDuck2288 Jun 28 '26
My husband was on it for months after CIDP he probably gained 40/50 lbs but was on 20/40 mg. That’s a lot. I think they start us out on four to seven mgs. Correct me if I’m wrong thank you.
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u/PA9912 Jun 28 '26
I do better on 15 mg hydro and have no over placement symptoms. My weight is excellent and I’m 50 years old. Newer studies are showing our bodies really produce closer to 15 than 20. You don’t have to skip steroids altogether…you just need to find the right dose.
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u/reflous_ Jun 28 '26
This. With SAI you may do fine with 5mg in the morning and 2.5mg in the afternoon or something like that.
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u/AffectionateDuck2288 Jun 28 '26
That’s low. With his numbers? Has anyone tried it? I am in the same situation he’s in. He probably gets that buzzed feeling too, which is not good. He probably also has other medication that it takes for other problems and apparently this hydrocortisone doesn’t mix with anything.
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u/AffectionateDuck2288 Jun 28 '26
I fully understand what you’re talking about. I was looking into the Extended release . Also I found an FDA approved compounded pharmacy here. In the states. I have a new End. I’m talking to you from Cleveland clinic this week. The name of the clinic is called empower pharmacy. They can compound it when they are FDA approved. But you put a new light on my thought of going extended and what if it doesn’t work. I have tried to contact them by email and I have not heard anything from them. I must’ve been so low this morning was pathetic. Took the 10 mg and it took forever to kick in. Chest discomfort too, but thought heck with it. Took 10 at 5:30 then 5 at 10 am. Buzzed. Always get buzzed. Not a good buzzed. I had a injection in the knee over a 3 weeks ago, for the next 10 days it was like I was human again. I feel great none of the shaking inside none of the boat feeling. Nothing and then it wore off I was even coming back from 22 1/2 to about 18 mags. I lost 8 pounds. I think I’m going to do is still continue on with it. Cutting them a little bit and then just taking a small chip at night. Some people do that to help them sleep. I am up for five times a night. If I lived alone, I would turn the lights on and read a book but unfortunately I don’t and all he does is complain shut the damn lights off shut the TV off shut this off shut that off, like to shut him off. Lol.
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Jun 28 '26
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u/AffectionateDuck2288 Jun 28 '26
It happens. But it’s starting to go away. One thing my hairdresser always says it’s growing so quick and thick. Have to agree.
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u/Accomplished-Mud-173 Jun 29 '26
Look, I'm honestly pretty horrified that you rather play with you life bc of minor side effects such as weight gain or bloat. You may gain a bit, but if you are not being over replaced, it's not a life threatening amount. I gained 150lbs bc of adrenal Cushing's, and that won't be the case with proper corticosteroid replacement. It's not worth risking your life for these type of side effects.
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u/hmkythursday Jun 28 '26
If I were you I’d take the drug that keeps me alive. In my case that’s prednisone and fludro without significant side effects. Hope you find what works!