My current baseline (normal schedule of Hydrocortisone) is 15mg at 8.30, 10mg at 12.30 and 5mg at 5.30, but my consultant and I agreed that I would try to reduce this down again at some point. There’s a few reasons for this, so first some science:
The ‘survival’ requirement of hydrocortisone is 12.5mg a day. But you literally just survive and breathe and maybe digest some food. You can’t really do anything else except not die. The standard or maintenance baseline for the UK tends to be 20mg a day, because it’s slightly more than the survival dose and gives you the ability to function (apparently, I really didn’t).
However, those numbers don’t take into account people being human beings. It’s like putting fuel in an old banger of a car and the same amount of fuel in a brand new energy-efficient car and wondering why the banger can’t get as far. In the same way the old banger might have valves that aren’t working or a hole in the tank, human beings are made up of different characteristics. So some people metabolise hydrocortisone more quickly which means it doesn’t last as long in their system, or if you’re overweight, you’ll need more to function- like putting fuel in a lorry and a car and expecting the same results.
When my synacthen test came back lower than expected, I was allowed to increase mine to 25mg a day immediately and then chatted to my endo and we agreed with what I’m currently on (30mg a day) with the proviso I try to get back down to 25mg a day. This is because steroids have a whole bunch of side effects that come with them when you take them over time.
- brittle bones
- weak muscles
- cardiac problems
- kidney problems
- blood sugar problems
- eye problems
- teeth problems
- st0mach problems…
I could go on, but basically they have many side effects. I don’t read that part of the leaflet in the box of tablets because I don’t have a choice in taking them.
- Not dying
- Having some energy
There’s a charity in America that really pushes for a balance between quality of life and steroid side effects. This makes sense, because, chances are, if I’m going to get side effects, they’re going to happen anyway, it’s more a case of when rather than if. But I would be a really bad patient if I didn’t at least try, and I like my endo and he’s done everything right by me so far, so I’m doing what he says.
After my recent trip to hospital, I’ve spent the last 2 and a half weeks tapering. I bloody hate tapering, so it kind of makes sense to taper slightly more and get the horribleness out of the way while I’m still ‘used to’ the horribleness and see if it works. If it doesn’t, I can go back up again. I’ll be trying 15mg/7.5mg/5mg for a while and then maybe back to 15/5/5/.
It might sound like I’m just doing a token gesture in tapering, but I’m really not. I’m giving it a proper go. Ultimately, I want to be on the lowest steroid dose I can be because that’s what’s best for me. But if I’m a bit Jekyll and Hyde ish, fall asleep mid conversation or randomly start crying, then this is why! (Apologies in advance!)
Side note: if you’ve read this and thought ‘oh but it’s only 2.5mg, that’s easy’, I’m telling you now those 2.5mg make a hell of a difference! And I don’t recommend saying that to me while I’m trying to reduce my dose because you’ll definitely be met with an ogre-like response…!