Now the last thing I want to do is get into a heated argument. However heapsreal I am more than happy to share my experience and point of view with you and others, apologies if I waffle on a bit.
From what I have read on the subject I personally wouldn't want to ever go over 15mg of HC.
I believe that 20-25 over can stop the bodies own production. And so for low dose for ME 15mg would be the max I would want to take. Obviously for those with addisons it's different.
Many people with ME like me will have hormones problems due to the HPA problems.
And often people are diagnosed as I was with delayed sleep phase syndrome, ie body clock is shifted.
As with any medication you should always "start low, go slow, and listen to your body".
I have saliva tests done that show I produce hardly any cortisol in the morning and far far too much at night. No wonder I cant sleep!
I started with licorice for a few months it did nothing.
I tried rubbing in hydrocortisone cream it did nothing.
So I went to dr peatfield who recommended I take 20-25mg a day! Well bloody good thing I have a brain and did some research. Dr myhill and dr teilibalm who I both greatly respect say no more than 10-15mg max. Dr myhill says 10mg.
So I bought some cortef, started slowly, and eventually found 5mg in morning and 5mg in afternoon to be amazing.It made so much difference.
However the cortef cost heaps, so changed to prednisolone. But after I few month it really didnt suit me and after reading more of dr teilbalms book, I realised that hydro is more natural, ie more like what the body produces than pred. so I decided I needed to change back. But I had to get it on the NHS, as I couldnt afford anymore private meds.
Luckily an NHS immunologist with an interest in ME asked my GP to prescribe it. And she did at 2mg prednisonlone a day which is about 10mg of hydro.
This NHS consultant knew I had immune problems so suggested I take 2mg a day of pred but one day a week I should take 50mg a day! his view is it would stimulate the b cells. Well after just two doses I felt like hell, so listened to my body, told my GP I wanted to come off the high dose, but no one should ever just stop like that, so I lowered to 12.5 just once a week. And then 7 once a week, still taking the 2 a day.
In that time I put on staggering amounts of weight and developed the typical steroid cushing appearance which I still have now.
I told the consultant I wasnt happy with this treatment, could he please tell my NHS GP to give me hydro instead, and she did.
I now take 10mg in the morning.I also take melatonin at night.
One to wake me up the other to put me to sleep.
I hope that long story made sence, and do feel free to ask any questions.
My view is-
No more than 10mg of hydro
Hydro is better than pred
Start low, and given people with ME are so so sensitive to meds, we should start even lower than most, give our bodies time to adjust.
Also I know I am a bit of a hypocrite saying this as I should be in bed now, but we need to realise
not to surf these night energy highs. IE by staying up late on the pc or with lights on.
Lights stop melatonin prduction, and train the body to start alert at night, so no wonder by morning its tired and wont produce enough cortisol.
As Dr myhill said to me once if I came into your house at 8pm everynight and cut the electric it would sort your body clock in no time.
I know its hard to be disciplined though when we have no energy all day and finally get some at night. But we have to try, our bodies need and want routine, esp with hormones. So taking hydro in small doses in the morning, mid afternoon makes sense.
Adrenals and thyroid go hand in hand so it does make sence to get your thyroid checked too.
To wayne, it was sooo interesting what you said about HC and allergy.
When Im tired most ie in the morning my MCSS is so much worse, I cant cope with any smells, but in the evening when my cortisol is higher I can tolerate smells more.
Apparently during stress or infection our cortisol production can be reduced so it makes sense to slightly increase doses during this time. I believe in ME our bodies are stuck in stress mode, so no wonder our hormones are all over the place.
Starting low dose HC does not mean we have to take them for life. We do need to take a balanced view. And never stop cold turkey!!
Also dreambirdie you said
"I started with just 5 mg (compounded) and raised my dose up gradually to 20mg. By the 5th week, I was having the worst anxiety of my life--worse than after being struck by lightning."
With the greatest respect I'm not surprised. the 20mg was too high and upping this quickly its no wonder you felt ill.
Also Ema you said
"Also, taking more than 10 mg of HC at a time is not a good idea. The body can't use that much at a time and it will contribute to negative side effects (such as high blood sugar and weight gain"
this is so interesting, and im wondering if I should take 5mg hc in morning and 5mg in afternoon like I used to rather than 10mg in morning.
How long does it stay in system for?
Now that I'm on LDN my adrenals seem to be better.
And if I could just get my sleep improved and find something to put me into deep sleep, I'm sure my body would be more happier to stay awake in day.
Remember that you need to sort your sleep, thryoid, diet and anything else going on in the body too. Just fixating on one piece of the puzzle wont work.
Sorry this is so long.
PS my friend also went to dr peatfield she took his advice and took 25mg a day of HC, a year later she is now in addisons crisis. 25mg was far too much. Am glad I never went back to dr peatfield and stuck with dr myhills advice.