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Hydrocortisone

elvira

Senior Member
Messages
146
Hello!

I have a question regarding hydrocortisone. I’ve been on 10 mg a day for 1,5 years (divided into two times). 2 weeks ago I went down to half the dose, 5 mg, because I didn’t know if I needed it anymore.

It went fine and I didn’t feel anything for 1,5 weeks - but since then I have crashed and now I’m super tired. Can the effect of quitting come later?

I’ve been feel exceptionally well for being me the last few months. This crash came out of nowhere and I can’t see any other reason. Today I went back to 10 mg and hope I will recover.

Thank you!
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
It's not recommended in ME because it can actually make ME worse. But the dose you're on here isn't mega high, even so it might have been high enough to supress your immune system. So yes your viral load might be higher in a crash now than it was before, which may sound like a contradiction but if the hydrocortisone made it easier to cope with PEM symptoms, then you wouldn't have felt them as badly before.

You might be stuck however at the higher dose due to the fact it's contracted in pwme

https://me-pedia.org/wiki/Hydrocortisone

https://drmyhill.co.uk/wiki/Hydroco...afely_and_without_causing_adrenal_suppression (this is the best page to read).

Looks like the dose you're on is supposedly ok, but it's heavily contested what the right dose is. I thought low dose was 5mg half and half throughout the day. Here myhill suggests it's 10mg.

Hope yu recover soon.
 

Judee

Psalm 46:1-3
Messages
4,497
Location
Great Lakes
We're so sensitive to drugs. Maybe it was too quick of a wean for your body or maybe you really do need it for now? :(

I found it helpful for getting through stressful events like when my Mom was hospitalized (just 1/8 of a pill at times) but it also seemed to rev my system up and cause me to feel wired so that I think I crashed more afterwards.

Hope you can figure out what will work for you.
 
Last edited:

elvira

Senior Member
Messages
146
It's not recommended in ME because it can actually make ME worse. But the dose you're on here isn't mega high, even so it might have been high enough to supress your immune system. So yes your viral load might be higher in a crash now than it was before, which may sound like a contradiction but if the hydrocortisone made it easier to cope with PEM symptoms, then you wouldn't have felt them as badly before.

You might be stuck however at the higher dose due to the fact it's contracted in pwme

https://me-pedia.org/wiki/Hydrocortisone

https://drmyhill.co.uk/wiki/Hydroco...afely_and_without_causing_adrenal_suppression (this is the best page to read).

Looks like the dose you're on is supposedly ok, but it's heavily contested what the right dose is. I thought low dose was 5mg half and half throughout the day. Here myhill suggests it's 10mg.

Hope yu recover soon.
Thank you for your response! It was prescribed to me by a ME specialist who has good experience with it. He ensured me it wouldn't cause adrenal suppression which I'm really afraid of. I was desperate for relief when I started it but now it sucks being dependent on it:pill: But maybe it has contributed to my improvements.
 

elvira

Senior Member
Messages
146
We're so sensitive to drugs. Maybe it was too quick of a wean for your body or maybe you really do need it for now? :(

I found it helpful for getting through stressful events like when my Mom was hospitalized (just 1/8 of a pill at times) but it also seemed to rev my system up and cause me to feel wired so that I think I crashed more afterwards.

Hope you can figure out what will work for you.
Thank you! Yes it was probably too big of a change as I'm very sensitive to drugs. I was so happy I kept feeling good the first week, I got really confused when the crash hit this late. But I guess for a lot of meds it takes a while for the body to adjust.

I went back to 10 mg today, I'm just worried I will get more and more dependent on it. But according to my ME specialist I can stay on it.
 

gm286

Senior Member
Messages
149
Location
Atlanta, GA
When I went from even just 5mg HC to 0, I was still dealing with symptoms for a month or two. I hope you can hang in there. I am now off completely after 4 years of prednisone and HC and could not be happier. By year 4, I was constantly bloated, sweating easily, and my skin was dry and thin. It all eventually reverses but requires time / patience.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,104
Location
australia (brisbane)
Hello!

I have a question regarding hydrocortisone. I’ve been on 10 mg a day for 1,5 years (divided into two times). 2 weeks ago I went down to half the dose, 5 mg, because I didn’t know if I needed it anymore.

It went fine and I didn’t feel anything for 1,5 weeks - but since then I have crashed and now I’m super tired. Can the effect of quitting come later?

I’ve been feel exceptionally well for being me the last few months. This crash came out of nowhere and I can’t see any other reason. Today I went back to 10 mg and hope I will recover.

Thank you!

Look into pregnenolone, it can help raise cortisol in some if levels are low. In my own experience it raised my low normal morning cortisol to the mid range of normal.
Pregnenolone is basically an upstream hormone that all other hormones are made from. Alot of recommendations for dosages online are 25-50mg a day but I think this is too high for many to start off on and I think many should start on much lower doses like 5mg and may even need to dose it every second day if one finds it too stimulating.
Just a suggestion to look into👍
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
reishi mushroom also supposedly raises cortisol, my adrenals were a complete disaster before I went on the reishi, but getting rid of ROS every morning helped too.

I take 200mg l actyle glutathione on an empty stomach in the morning, JArrow brand
Life Extension Reishi is expensive but even 1 cap 3x a day is prob enough to give you basic protection.

I'd recommend both of these to anyone, but especially someone who's dealing with HPA issues. At the start of the year my HPA completely healed, it seems to have been related to my gut health. But the supplements are important too.

Good luck.
 

elvira

Senior Member
Messages
146
When I went from even just 5mg HC to 0, I was still dealing with symptoms for a month or two. I hope you can hang in there. I am now off completely after 4 years of prednisone and HC and could not be happier. By year 4, I was constantly bloated, sweating easily, and my skin was dry and thin. It all eventually reverses but requires time / patience.
That’s so good to hear you were able to quit! And comforting to hear that it is normal for it to take time. I didn’t realise what a strong medicines it was and how dependent + hard it was to quit… I think I will postpone decreasing it for now until I’m stronger. And then take it really slow.

I’m sweating more also except all the bloating, so this is why!
 

elvira

Senior Member
Messages
146
reishi mushroom also supposedly raises cortisol, my adrenals were a complete disaster before I went on the reishi, but getting rid of ROS every morning helped too.

I take 200mg l actyle glutathione on an empty stomach in the morning, JArrow brand
Life Extension Reishi is expensive but even 1 cap 3x a day is prob enough to give you basic protection.

I'd recommend both of these to anyone, but especially someone who's dealing with HPA issues. At the start of the year my HPA completely healed, it seems to have been related to my gut health. But the supplements are important too.

Good luck.
That’s good to know! I was just thinking when I start getting rid of some of my meds that I would like to support the body with some natural supplements.

What is ROS?
 

Judee

Psalm 46:1-3
Messages
4,497
Location
Great Lakes
Look into pregnenolone,
I don't know why but I had a really bad reaction to this and I took it before going on a store errand which was a huge mistake. I had to sit down in the store's office section (thankfully they had one :)) because it felt like I was having a heart attack.

Maybe men and women react differently to it. IDK. Just wanted to put the warning out there for anyone else. At least maybe just to try a tiny dose to start and of course, not when you have to be somewhere but home just in case. :)
 

lenora

Senior Member
Messages
4,926
I've found that when I'm on cortisone therapy, I'm Superwoman (in comparison to how I usually feel). At least I was warned by the nurses that when I stopped, I'd be so weak that it would be unbelievable.

I had to be on it for major reasons.....but they were absolutely correct. I now have bars on the walls everywhere that help me in case I need them. The weakness was unbelievable. I can't remember how long it lasted, but I do remember that ultra-weakness. Too bad that someone didn't tell you beforehand. Do feel better and I'm sure you will. Yours, Lenora
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
I'd buy the l actyle glutathione and start it straight away. Every single ME patient should be taking it, or a lipsomal one if you can tolerate the phosphydelserine. That's assuming that they can afford it, it's all so expensive!

ROS = reactive oxygen species, ME patients have tons of this: "This leads to accumulation of O2·− as well as ROS and RNS by inducing mitochondrial dysfunction and production of proinflammatory cytokines (15)." https://www.pnas.org/doi/10.1073/pnas.2024358118

Reishi as I say is a lot more expensive but life extension reishi definitely works, been on it 3 years, currently experiencing very bad stress and haven't crashed yet. I think it keeps me on the straight and narrow. If I come off it I am much worse.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,104
Location
australia (brisbane)
I don't know why but I had a really bad reaction to this and I took it before going on a store errand which was a huge mistake. I had to sit down in the store's office section (thankfully they had one :)) because it felt like I was having a heart attack.

Maybe men and women react differently to it. IDK. Just wanted to put the warning out there for anyone else. At least maybe just to try a tiny dose to start and of course, not when you have to be somewhere but home just in case. :)

That's a good call, I agree.

IDK if it's a male or female thing but when I was looking deeper into adrenal fatigue/dysfunction, it was mentioned that the longer one had been in that state the more sensitive they would be to treating adrenals and cautioned going low and slow.

My experience with pregnenolone wasn't easy sailing. I started with the recommended pregnenolone replacement dose in a transdermal product of 50mg/ml per day. There were positives that first day that made me keep experimenting. The first few hrs i remember my brain fog cleared and I had good energy and my general joint pains like knees and back etc disappeared. It was like all my inflammation went away. But then a few more hrs later the horse bolted and I felt way overstimulated, headache, nausea etc and didn't sleep at all that night. I can imagine what you went through too, Judee.

I was intrigued by how good I initially felt even though it sent me into a hell hole. I gave it a few days to wash out and tried half the dose, nope no good. Let it wash out etc. The benefit of the transdermal was I could titrate the dose to a very small dose. I was basically putting a small dab on my wrist every couple of days and was where I started from that I could tolerate and I felt good on and I can't recall how long it took but several months I built up to using 50mg a day.

My morning cortisol which is suppose to be in the upper third of the normal range, was only just in the lower third of the range and my dhea was below the normal range. Once I could tolerate the 50mg of pregnenolone a day, my morning cortisol was in the middle third of the range. I did have to add dhea for it to increase and I had to increase it the same way I did with pregnenolone, very low and slow.

I think having dhea within a normal range is important too and can help balance out the effects of pregnenolone/cortisol like a yin and yang I guess.

I still take 25mg of dhea as my levels drop below normal when off it. I haven't used pregnenolone for a couple of years now but a blood test a few months back showed my morning cortisol was in the upper third of the normal range. So maybe the pregnenolone helped there???

As well as helping improve down stream hormones, it's supposedly can help neurotransmitters function better. I'm not really up on it though.

I have some old posts on pregnenolone, probably atleast 10yrs ago but above is a review that I can recall off the top of my head.

I think anything stimulating/energising if used in cfs, one should go low and slow.