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- 93
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- Glasgow (UK)
Hi there thank's for your long and informative reply, I know these aren't reccomended in the long run but I've moved my dose to 5mg two times per week this is a very theraputic dose.
There's no harm in trying a low therapeutic dose every other day to mange your symptoms.I was going to start a thread on Prednisone, but conveniently saw this here.
I experience what I believe, subjectively, are low cortisol symptoms, i.e. endless hunger, crashes, OI etc. At their worst, my body will just pump out adrenaline as a presumed compensatory mechanism, which is awful. I was like that a few weeks ago and honestly felt like I was near-death; my body just didn't feel like it could keep up with the demands of maintaining itself any longer: I was waking up every 3 hours due to adrenaline, having to eat near-constantly etc.
I started taking a herb called Haritaki for my gut (as recommended by CFS remission). I am not sure if it's the adaptogenic properties, or the fact that it was presumably killing an infection, but within days I was feeling better -- albeit erring on the side (again, subjectively) of high cortisol. I don't believe I can remain on the herb, as, from my understanding, it kills (good) E.Coli.
I'm not sure what to do next, but also know that when I enter that 'low cortisol/high adrenaline' state, my functioning deteriorates so much that I am just living to get through the next 5 minutes.
I've been wondering if there would be any risk in trying Prednisone? As a disclaimer, I *did experiment with Hydrocortisone about 6 months ago: it helped, to an extent, but the ups-and-downs were difficult to deal with and it also made me feel spacey/aggressive/sick at times.
Does that mean Prednisone is likely to affect me the same way? I don't know if I have a Lyme/Lyme-like infection (I tested negative) but one doctor told me that the 'sick' feeling on HC indicated a bacterial infection.
I've tried other measure to help adrenals (b12, methylfolate, Pregnenolone etc.) without success.
I experience what I believe, subjectively, are low cortisol symptoms, i.e. endless hunger, crashes, OI etc. At their worst, my body will just pump out adrenaline as a presumed compensatory mechanism, which is awful. I was like that a few weeks ago and honestly felt like I was near-death; my body just didn't feel like it could keep up with the demands of maintaining itself any longer: I was waking up every 3 hours due to adrenaline, having to eat near-constantly etc.
I experienced identical symptoms for at least a year or possibly longer during 1999/2000 and nothing worked for me except 5mg Prednisolone as well as 2 grains of Armour thyroid medication but I didn't get those till 2003 and that was through a private Endo who practised integrative medicine. My symptoms weren't quite at Addisons level but almost I believe. I also had loss of body hair and some other signs.
Most of these symptoms gradually disappeared over a period of time though I still need to eat regularly and have at least one small snack between meals. With treatment I could go all night without having to eat or being woken with panic attacks. Like you I remember it as a horrendous time and the symptoms were so severe they felt life threatening. I used to have frequent vertigo attacks and also attacks where everything would go black. It really was like being in a living hell over which I had no control at all which made it even more frightening.
My blood sugar was impossible to keep stable and my bp was very low. I don't have those symptoms now at all and the only time I get dizziness is if I have got a bug of some sort or if I do too much physical exercise.
I think the only way you are likely to be treated is by a doctor who specialises in integrative medicine and who can run a saliva cortisol/DHEA over a 24 hour period to see what is going on at cellular level.
I really feel for you and sincerely hope you can get some help.
Pam
Thanks Pam. I remember you replying to me when I was looking into hormone replacement a year ago. I did try Armour Thyroid, but it crashed me further; ditto with T3.
I don't believe I would get steroids prescribed for CFS in Aus, so will just order online. If HC didn't help, do you think it still might be worth trying the Prednisolone? Do you ever feel 'sick' on the Pred, or like it's suppressing your immune function in anyway?
I was on h/c first for 6 months but it gave me too many highs and then lows but Pred has never done this to me, it has always just felt natural. The side effects I get are slight fluid retention in my ankles and also slightly thinner skin but I was 69 last week so my age won't help with these.
However I am averaging 8200 steps daily throughout the past year so you can see how much it helps me. My immune system isn't fantastic, I still pick up lots of viruses in the winter/spring but I also did prior to being on the steroids so there is no difference.
Yes I am definitely talking about oral Prednisolone!
Pam
One of my major problems is that my sleep cycle is irregular -- partly to cope with living in a noisy household. Do you think that if I tried a steroid but still went to bed late, it could be detrimental? This is one of the issues I had with HC, since I was frequently taking my last dose before bed (2-3am)