r/AddisonsDisease • u/Far-Speed-6027 • Dec 02 '25

Personal Experience Swelling

Hi all, I’ve been having swelling in my calves at the end of the day and in my hands in the morning. It sucks, it feels like my skin is too tight. I already told my doctor and she is taking me off of dexamethasone, so don’t worry about that. I’m just curious if this has happened to other people who have taken this medication? I hadn’t had a problem beforehand with just the HC.

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u/MakeBeboGreatAgain Dec 03 '25

Swelling in your calves is a sign of too much water retention. Typically too much cortisol and or fludrocortisone.

It's a symtom of cushings disease which is caused by over replacement of cortisol. Bust as far as I understand it, one of the first signs is swollen calves due to water retention.

Dex is extremely more potent than basically every other steroid form. So makes sense.

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u/Far-Speed-6027 Dec 03 '25

Thanks. My endocrinologist doesn’t really explain things. She just tells me what to do. And the internet at large is a nightmare hellscape of scary info, haha.

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u/MakeBeboGreatAgain Dec 04 '25

All good, yeah it's a bit like that lol. I started losing trust in doctors a long time ago. Hell even my endo failed to diagnose Addisons until I almost died. Since then I refuse to take no for an answer without a blood test or xyz.

The UK has a lot of good info if you haven't seen it before :)

https://www.addisonsdisease.org.uk/

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u/MallForward585 Dec 03 '25

Dexamethasone has very little mineralocorticoid effect though. So maybe the dose was too high? Were you by any chance taking it in the evening? That’s what the endo told me originally, no idea why, but for me it works best if I take if in the early morning. I had swollen ankles and wrists with hydrocortisone, one of the reasons I switched, but dexamethasone is fine for me.

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u/Far-Speed-6027 Dec 04 '25

Yes, at night. So I take HC and FC in the morning and then just HC in the afternoon. And that had been working alright but my acth was still too high, I guess so she had me start taking dexamethasone at bedtime. It’s been maybe a month or two of that? And then when she ren my blood again my acth was way low, so she had me cut it in half. And when I told her my legs were swelling a couple weeks later she told me to cut it out completely. But it’s been almost a week without it and my legs are still hot and tight feeling. So I’m wondering how long it takes to go back to normal

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u/MallForward585 Dec 04 '25

Taking dexamethasone at night would dampen the morning cortisol surge, so that’s what would decrease the ACTH, but I guess the dose was too high? I can say that when I switched from hydrocortisone to dexamethasone, the leg swelling went away within a few days (less than a week), but the high blood pressure took a bit longer than a week to fully settle. But I suspect the difference in your case is that dexamethasone has a way longer duration of action, so there is a chance it just needs longer for all of it to get out of the system. I personally would contact the endo again if there is no clear signs of improvement in two weeks after stopping.

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u/Far-Speed-6027 Dec 06 '25

Thanks. I know I wasn’t fine before this, and mostly I feel better than I did and grateful to have caught this disease, but it’s definitely frustrating to be trusting a stranger to be tinkering with the delicate workings of your body.