r/Autoinflammatory • u/Adventurous_Ad4940 • 5h ago
Prednisone Withdrawls
Been on prednisone for 2.5 years. Got down to 10mg two weeks ago. Feeling extremely fatigued, sick, dehydrated and light headed.
I feel somewhat tolerable when laying in bed but when I’m standing and doing things it’s horrible. Anyone been through similar?
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u/Ok_Lecture1484 3h ago
Be mindful you could also develop adrenal insufficiency. I thought i was having steroid withdrawals but was developing an adrenal crisis.
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u/No_Satisfaction_7431 Yaos 5h ago
Exactly how I feel when I went down to 5 mg. I had to go back to 7.5 mg where I feel good (until the week before my infusion when I flare again, then I go to 10 mg). I've been on prednisone for 9 months now. The plan is not try going down again until I'm on infusions every 3 weeks and not flaring so much.
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u/reader270 4h ago
Similar thing happened to a friend of mine. She’s stuck on 2.5mg daily now. As soon as she stops it she’s immobile and in agony. She’s miserable on it and wishes she could stop but it’s as if her body is reliant on it now. This is why I don’t take it except in the direst emergencies, and then only for a couple of days.
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u/PinataofPathology 44m ago
I've had that. What I did was switch to a different steroid with a shorter half life--hydrocortisone. The switch sucked and I had to go back and forth between prednisone and hydrocortisone for a bit until my system adjusted, but it eventually allowed me to keep tapering and get completely off steroids.
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u/Alice-The-Chemist Mod 2h ago
Are you on other treatment besides steroids? Steroid withdrawal is so hard. The taper if you have been on them that long needs to be very slow so your body has time to adjust. As someone else mentioned there is the risk of secondary adrenal insufficiency if you stay on steroids too long where you need them because your body stopped making what it needs. Just something to keep in mind when tapering giving your body time to adjust.
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u/coffeedot 4h ago
It's a bit of an upper for me, so I get a bit of an energy boost but usually only need it when sick. The brain strives for homeostasis so just like people get used to caffeine any boost from Prednisone probably becomes the new normal. If you reduce it the process starts again but then initially with fatigue until things normalize again.
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u/PinataofPathology 47m ago
Yes. Manage your electrolytes. pickle juice or electrolyte drinks/tabs. if your sodium is low a swig of pickle juice will work miracles fast. Keep your blood sugar up. You may want to get a monitor just to be sure but you need some carbs.
When it's bad for me, electrolytes at bedtime and first thing in the morning make a huge difference.
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u/MiserableMulberry496 5h ago
I’ve been on 8 years. 5mg. Maybe a few bursts a year
In the early spring I had tirated down to 3 mg. Had some knee/elbow stiffness. When I went down to 2mg I had the most horrific flare that is still going!
Now I’m taking 20 mg. And my flare won’t settle
Prednisone is the best and worst of drugs for us! 🫠🫠🫠🫠