Low dose hydrocortisone as a treatment for ME/CFS

Well, how low is low dose? I've seen what long term treatment of steroids can do to a person. I would want some guarantees not "may" or "might" for "some" before going down that path. Especially, if we're talking long term.

 

The study by Cleare/Wessely published in The Lancet (that concluded a positive benefit for some patients) were allocated 5 or 10 mg daily.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(98)04074-4/fulltext

 

Surely, in all these years of pwME being dismissed, disbelieved, and ignored, somebody, somewhere, patient or medical doctor, must have tested cortisol occasionally? It isn't even a difficult test to get done. These days people can get cortisol in blood and cortisol in saliva tested without needing a doctor's permission (in the UK). It's an Everest-sized oversight if it has never been looked into before. Or am I missing the point somewhere?

 

Thanks for the link.

So they tested for a period of a month. One group on 5 or 10mg for a month and the other a placebo. They conclude further, longer term research is required.

Someone who knows more about this (almost everyone I suspect) please correct me here if I'm wrong. One of the issues with long term steroid use and the whole carefully tapering off required after several months on cortisone is because the body adapts. It reduces the amount of cortisone (cortisol?) that it naturally produces.

So, is it not likely that the body will adjust to a low dose taken in the long term by automatically producing less?

 

The theory with low doses is that this might not happen, or it may only happen to a small degree.

It's surprising they're publishing on this again, when it looked like they'd given up on it a while back.

 

I wonder whether a two-month trial of hydrocortisone, instead of one-month, would have made the improvement indisputable.

 

Did this type of research stratify subjects by symptoms? Any potential benefits, however mild or great, may depend on alleviating a specific symptom.

 

Having just tried corticosteroids, I am wary of research suggesting that low cortisol might be causing ME symptoms.

My reaction to a relatively low dose of corticosteroids was very bad. It made me feel like I was in a constant inflammatory PEM crash, and gave me horrible psychiatric side effects.

I feel like low cortisol in ME might be balancing out something else and that messing with it might not be a good idea.

Of course I'm speaking anecdotally not scientifically, but there have been several studies of corticosteroid use in ME without much evidence of benefit.

 

I avoid corticosteroids as the plague

 

Me too. I've taken hydrocortisone before (I have asthma too) and while it gave me a little lift, it made me more wired, more likely to crash, and sweaty.

 

I've had high dose one off injections occasionally because of allergies. I too felt very wired and edgy. I just assumed that was the symptoms of the allergy and being in A&E, but now I'm wondering if some if it might have been a side effect of the steroid.

 

I was prescribed low dose hydrocortisone by a naturopath as per William Jefferies book. Took it for a few months. Didn't seem to have any significant (or even insignificant) effect on my energy or other symptoms but I went from having no stomach problems to being hardly able to eat anything. When I realized it was may be the cause (yes- I always took it with food) and stopped taking it my stomach gradually healed.