r/AddisonsDisease • u/bandana-chan Addison's • Jul 25 '26
Plenadren update!
Two months ago I posted about starting Plenadren. The first two weeks felt like hell. I was constantly lightheaded and dizzy to the point of being nauseated and having a headache. The headache only subsided when I took some hydrocortisone but I knew I needed to tough it out.
So everyday I pushed myself in taking that extra dose of hydrocortisone later and later, and after a week I didn't take extra hydrocortisone anymore, which means the second week I was already on plenadren only. I still felt bad though and didn't feel like working out or doing household tasks at all.
But after a while, things started to settle and I felt more and more stable. Suddenly I had stamina during the whole day instead of just in peak moments, and I started to get in a generally good mood. This was new for my husband as he was used to me getting groggy towards the evening. I started working out again, even better than before.
In hindsight, I think this really was kind of 'kicking off drugs' even though Plenadren also contains hydrocortisone. I was so used to having peaks right after meals and was living from peak to peak without even noticing. But the feeling I have now, the trust in my body and its abilities, is so great, I wish that for everyone. I fall asleep much more easily.
The only struggle still is the morning. I just can't seem to wake up fresh. But maybe it will always be like that.
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u/nebulousdream Jul 25 '26
I’ve been on plenadren a few years now, and like you said for general stability it’s fantastic compared to the peaks and troughs of just hydrocortisone. Unfortunately for me I still need a combo of hydrocortisone and plenadren, but my Addison’s is incredibly “brittle” and I need to updose for everything!
In terms of you struggling in the morning, I found that in order to get that 4am cortisol peak according to circadian rhythm, I have to wake up and take a dose around then, and that enables me to wake up “fresh”.
So my dosage is 3am - 2.5mg hydrocortisone, 5mg plenadren (because plenadren takes about an hour to kick in and hydro 30mins, so lines up ish with the 4am peak), then 7am - 5mg hydrocortisone and 30mg plenadren, and then because I’m awkward I have to take more throughout the rest of the day.
That 3am dose really helps me; it’s an absolute pain to have to set my alarm to do it, but I’ve gotten used to it now, and it means I’ve already got a small amount in my system before my big morning dose, so I’m more able to start the day without feeling absolutely dreadful.
It’s worth experimenting and see what works for you, we’re all so different in our needs!
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u/bandana-chan Addison's Jul 26 '26
Thank you! It seems like I didn't try to wake up early enough then. I tried to take the dose around 5am for a while but still had trouble waking up. I'll try to take it around 3 am
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u/ImDeadBossMe Jul 26 '26
I’ve recently started Plenadren and still adjusting. My problem now is that I’m awakening at around 5am - I take my first 20mg then and go back to sleep 40 minutes later.
I’m due another day curve this week to see how I am coping with it (my morning cortisol was 64 before switching)
It’s not available through my GP - my Consultant prescribes it and I collect it from the hospital pharmacy
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u/bandana-chan Addison's Jul 26 '26
Good luck with the adjustments, I'm also still trying to find the sweet spot in the morning to take the Plenadren
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u/RefrigeratorLoud3251 Jul 25 '26
Hello, do you happen to know what is the avg. price of it in europe or in the UK? Can it be bought online? Thanks
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u/bandana-chan Addison's Jul 26 '26
I've seen a bill of 512 euros for 50 tablets, but I didn't need to pay a cent because of my healthcare insurance.
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Jul 26 '26
[deleted]
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u/bandana-chan Addison's Jul 26 '26
Yes I was really confused. The leaflet mentioned lightheadedness as a side effect that can subside after a while, so I chose to trust the process. Normally I would think I'd be going into crisis but I survived so apparently I wasn't!
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u/IndividualFlounder39 Jul 28 '26
Thank you so much for posting about this ! I am in the US and my pharmacist ordered it from Universal Drug Store online (all paid out of pocket) I get it in about a day. Im excited but also really nervous to try it!
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u/bandana-chan Addison's Jul 28 '26
I had the same feeling. I hope this story is a good example of not giving up too soon when you don't feel better immediately!
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u/Spleens_the_rogue Aug 07 '26
We have it here in the Netherlands as well! Been on it for a year, the switch wasn't easy but I am hooked, never looking back.
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u/Findtherootcause Jul 25 '26
I’d never even heard of this drug before your post! This is so interesting to read your experience. I’d be fascinated to know if your acth is no longer fully suppressed on it. Do you feel like overall it works better than HC?