Taking hydrocortisone before activity to prevent PEM crashes---I think that's on target!!

grapes

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A month ago, as I had reviewed in my mind all the crashes I've had that started in early 2016, it dawned on me that these crashes could be related to my cortisol levels. I even told my Functional Med doc that it's like my cortisol CRASHES after activity, and it takes days to recover from. Those many "days", I said, are like the time it takes for cortisol to come back up..

So you can imagine how my eyes popped when I saw what I am copying to here below.

In other words, I haven't crashed as much the past two weeks since I've been committed to using ACE aka 3 Adrenal Cortex in the morning and 2 at noon in response to stress from detoxing. i.e. not right before activity because I wasn't thinking along those lines. Now yesterday, I DID CRASH, and am still in the miserable crash today, after two hours of activity yesterday. A bad crash. And I didn't use my ACE!!

So after reading the below, I need to be committed to taking ACE BEFORE I do activity, even if I'm not taking it an hour or two before. Just TAKE IT. I'm going to experiment with 200 mg ACE first.

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Corticosteroids as Potent PEM Shielders

Corticosteroids such as prednisone, prednisolone and hydrocortisone are reported to be potent PEM shielders. When normal doses of these corticosteroids are taken around one or two hours before any physical or mental exertion, they can totally prevent any PEM from later appearing.

But these drugs were found to be useless if taken after the exertion. That is, they do not help if you are already experiencing PEM from a previous period of exertion.

Note that it is normal doses of corticosteroids (eg, prednisolone 20 mg, or hydrocortisone 80 mg) that can prevent PEM, not the low doses (eg, prednisolone 5 mg, or hydrocortisone 20 mg) that some ME/CFS patients take daily.

And note that normal doses of corticosteroids should only be used occasionally in ME/CFS, perhaps as a maximum of once a week. If normal doses are used every day on a long term basis, this can lead to worsening of ME/CFS (possibly because the corticosteroid Th1 immune suppression may allow any underlying viral infections to proliferate).

Examples of ME/CFS patients using corticosteroids to prevent PEM:

▶︎ @Patrick* found that prednisone at a dose of 20 mg taken a just before a mentally exerting event (such as socializing) was effective at relieving ME/CFS symptoms. Sometimes he would take another 20 mg later in the day. Other ME/CFS patients have vouched this works effectively and reliably (though others report ill effects from this corticosteroid drug). Note that this dosing is only used as a one-off, not regularly every day.

▶︎ @hamsterman found hydrocortisone at a one-off dose of 80 mg (or alternatively and equivalently prednisolone 20 mg) taken 30 minutes before a mentally or physically exerting event very effective for preventing PEM due to physical and mental exertion:

Correction: @hamsterman told me he was actually using prednisolone and not prednisone as he stated in the quote above. The former takes effect faster.

Note that @hamsterman said he has the autoimmune disease Crohn's, which causes has extreme fatigue, though thinks he may have ME/CFS as well.

▶︎ @gregh286 found prednisone will block PEM from appearing.

How long for the corticosteroid PEM shield to kick in? Prednisone takes around 2.6 hours for the drug to reach peak levels in the bloodstream, whereas prednisolone is faster, taking only around 1.3 hours. Hydrocortisone takes around 1 to 2 hours. Ref: 1

So when taking any of these corticosteroids in advance to prevent PEM from a physical or mental exertion you are about to perform, give these drugs enough time to kick in before starting the exertion, else your PEM shield will not be in place. CAUTION: note that there are also timed release versions of prednisone, which only slowly release the drug into your system over several hours, so it might be best to avoid these.

What is the dose equivalence of different corticosteroids? Difference corticosteroid drugs have different strengths: hydrocortisone 80 mg = prednisone 20 mg = prednisolone 20 mg = methylprednisolone 16 mg = triamcinolone 16 mg = dexamethasone 3 mg = betamethasone 2.4 mg. Source: here.

How long does the corticosteroid PEM shield last? In terms of how long the "PEM shield" lasts, the plasma half-life of prednisone and prednisolone is 3 to 4 hours, and the plasma half-life of hydrocortisone is 2 hours. So once your "PEM shield" is active it will last for say one or two half-lives, ie, your PEM shield may last about 4 to 8 hours for prednisone and prednisolone, and last around 2 to 4 hours for hydrocortisone.

When taking prednisone 20 mg, @hamsterman found its PEM protection lasted for as long as 8 hours; but when he tried exercising 13 hours after his prednisone, then he crashed. So for a single 20 mg dose of prednisone, around 8 hours would seem the limit of its protective effects. Of course you could take a second 20 mg dose at the 8 hour point, and get another 8 hours of protection.

Efficacy of the corticosteroid PEM shield. This is how effective @hamsterman found a one-off dose of prednisolone 20 mg to be at completely eliminating PEM from a major physical workout at the gym:

Note that @hamsterman was using prednisolone and not prednisone as he stated in the quote above. Interestingly enough, after doing this intense cardiovascular exercise once weekly for a year, courtesy of the PEM shielding provided by corticosteroids, @hamsterman was able to completely cure his POTS (see here). But his ME/CFS has not improved through exercise. POTS is known to responds well to exercise, whereas ME/CFS does not.

Corticosteroids may lead to major problems if taken daily for weeks in a row. If corticosteroids are used every day on a long term basis of weeks, this can lead to worsening of ME/CFS, perhaps because the immune suppression from the corticosteroids may allow any underlying infections to proliferate (corticosteroids reduce the antiviral Th1 response, reduce T-cell function, and increase the antibacterial Th2 response).

See the warning in this post, which cautions against using prednisone for any extended period of time, and warns that the PEM protective effects do not work for the whole day, they seem to wear off after about 6 to 8 hours. Prednisone is a strong drug, and has sometimes caused adverse events in ME/CFS patients.

Dr Chia says two ME/CFS patients who took prednisone daily for two weeks remarkably improved; but when they tapered off they got much worse, and ended up in the hospital. He believes it such extended use of corticosteroids allows enterovirus to proliferate.

The mechanism by which corticosteroids provide a potent PEM shield may relate to their effects on energy metabolism and mitochondrial oxidative phosphorylation. Mitochondria possess a glucocorticoid receptor, and that receptor regulates oxidative phosphorylation.

https://forums.phoenixrising.me/thr...vent-pem-post-exertional-malaise.48438/page-6
 
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Hmm, interesting. I have a strong prejudice against prednisone after what it did to Kathy when she took it for several years for asthma. And it has done similar damage to a lot of other people throughout the decades.
 

Hip

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The above quote by @grapes comes from the PEM busters thread, which lists drugs and supplement which can prevent PEM from occurring after exertion, or ameliorate PEM once it has occurred.

The top PEM busters are corticosteroids, pyridostigmine and Cannabis.

Corticosteroids are only really safe for occasional use, not more than one day a week say (as long term use of corticosteroids often makes ME/CFS patients worse). But if you have an important day planned where you will unfortunately need to exert yourself, then corticosteroids taken on that day may help prevent PEM from occurring.

Pyridostigmine is a much safer PEM buster, as you can take this all the time.
 

grapes

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Hmm, interesting. I have a strong prejudice against prednisone after what it did to Kathy when she took it for several years for asthma. And it has done similar damage to a lot of other people throughout the decades.
Note that people are only using it per activity. NOT all the time.
 

gbells

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Avoid corticosteroids. I had to take them for lupus until I was switched to Alieve. Long term use entails major side effects such as bone loss and diabetes.

Oral corticosteroids
https://www.hse.ie/eng/health/az/c/corticosteroids/effects-of-corticosteroids.html

Side effects of oral corticosteroids that are used on a short-term basis include:

  • an increase in appetite,
  • weight gain,
  • insomnia,
  • fluid retention, and
  • mood changes, such as feeling irritable, or anxious.
Side effects of oral corticosteroids used on a long-term basis (longer than three months) include:
  • osteoporosis (fragile bones),
  • hypertension (high blood pressure),
  • diabetes,
  • weight gain,
  • increased vulnerability to infection,
  • cataracts and glaucoma (eye disorders),
  • thinning of the skin,
  • bruising easily, and
  • muscle weakness.
 

gbells

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It's just suppressing inflammation which encourages the patient to overdo it and crash. It doesn't do anything to help the underlying mitochondrial pathology that is causing the inflammation.

People need to know their limits and learn to work within them (spoon approach to energy management).
 

grapes

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Avoid corticosteroids. I had to take them for lupus until I was switched to Alieve. Long term use entails major side effects such as bone loss and diabetes.

Oral corticosteroids
https://www.hse.ie/eng/health/az/c/corticosteroids/effects-of-corticosteroids.html

Side effects of oral corticosteroids that are used on a short-term basis include:

  • an increase in appetite,
  • weight gain,
  • insomnia,
  • fluid retention, and
  • mood changes, such as feeling irritable, or anxious.
Side effects of oral corticosteroids used on a long-term basis (longer than three months) include:
  • osteoporosis (fragile bones),
  • hypertension (high blood pressure),
  • diabetes,
  • weight gain,
  • increased vulnerability to infection,
  • cataracts and glaucoma (eye disorders),
  • thinning of the skin,
  • bruising easily, and
  • muscle weakness.
Again, the above is mostly about daily use, and probably taking more than needed. Addison's patient don't necessary see all those side effects. Nor do thyroid patients who need hydrocortisone for adrenal fatigue. The latter patients find the right physiologic amount, not the high pharmacological amounts which can cause those side effects..
 

grapes

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In reference to the last paragraph/last two sentences that I posted above: The mechanism by which corticosteroids provide a potent PEM shield may relate to their effects on energy metabolism and mitochondrial oxidative phosphorylation. Mitochondria possess a glucocorticoid receptor, and that receptor regulates oxidative phosphorylation.

I had to look up what "oxidative phosphorylation" means: the metabolic pathway in which cells use enzymes to oxidize nutrients, thereby releasing energy which is used to produce adenosine triphosphate (ATP). This takes place inside mitochondria. Almost all aerobic organisms (those who use oxygen) carry out oxidative phosphorylation.

I'm wondering if my low B2 is a factor to all this too. It's at the bottom of the range in serum, and that can mean my RBC is below range. B2 is "essential to many enzymatic reactions that take place in the mitochondria." And sadly, I can only bring my B2 up slowly, as if I take too much, it causes me to over-methylate and I feel pretty bad. I can take 20 mg riboflavin without an issue, but I was adding 100 mg and another 100 mg daily on top of that 20 to get it up quicker. Big mistake.
 

grapes

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It's just suppressing inflammation which encourages the patient to overdo it and crash. It doesn't do anything to help the underlying mitochondrial pathology that is causing the inflammation.

People need to know their limits and learn to work within them (spoon approach to energy management).
Working with limits is a good thing. But there are testimonies that single use of cortisol before activity prevented PEM. That is impressive. Remember, single and occasional use.

And not all of us who have PEM have inflammation. I definitely don't. Have regularly tested inflammation labs. Instead, I'm pretty sure I have weakened adrenals from three years of major stress, and didn't put two and two together about my adrenals until recently.
 

Hip

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It's just suppressing inflammation which encourages the patient to overdo it and crash. It doesn't do anything to help the underlying mitochondrial pathology that is causing the inflammation.
If you read the above text quoted by @grapes, you will see that corticosteroids modulate mitochondrial functioning. Mitochondria possess a glucocorticoid receptor, and that receptor regulates oxidative phosphorylation. Refs: 1 2

It's this modulation of mitochondrial oxidative phosphorylation which conceivably may be behind the ability of corticosteroids to prevent PEM.
 

Hip

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Incidentally, compounds in cannabis may also directly affect mitochondria: this article says cannabinoid type 1 receptors (CB1) are found on mitochondria, and THC from cannabis is an agonist of this CB1 receptor, whereas CBD is an antagonist of this receptor.

So the anti-PEM effects of cannabis may conceivably arise from its ability to affect the CB1 receptor on mitochondria.
 

grapes

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Incidentally, compounds in cannabis may also directly affect mitochondria: this article says cannabinoid type 1 receptors (CB1) are found on mitochondria, and THC from cannabis is an agonist of this CB1 receptor, whereas CBD is an antagonist of this receptor.

So the anti-PEM effects of cannabis may conceivably arise from its ability to affect the CB1 receptor on mitochondria.
We live in a legal state and make cannabis oil for better sleep for husband. So I'm eager to try it. I am blown away to see all the things that can be taken for PEM, whether shielding or relieving. I will be the guinea pig with ACE (adrenal cortex).
 

grapes

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What I posted above that started this string also mentions those substances that SHEILD FROM PEM AND REDUCE PEM after it's hit you. https://forums.phoenixrising.me/thr...vent-pem-post-exertional-malaise.48438/page-6

So late last night after my first full day of MISERABLE FATIGUE, I discovered I did have CoQ10 (ubiquinol) and creatine monohydrate. So this morning, feeling absolutely horrible with fatigue again, I took both over the next few hours: Over 2000 mg ubiquinol and 10,000 mg of creatine monohydrate. (I have ordered the creatine hydrochloride).

And by 2 pm today, I was feeling noticeably better!!

BUT....it all went south by late afternoon and evening. Felt horrible again.

UPDATE: continued the high CoQ10 the next day, today, and felt significantly less tired.

I will say this: several years ago, when I had monster fatigue while detoxing heavy metals, I discovered that high dose CoQ10 did help a lot to counter that fatigue. I was close to 3000 mg ubiquinol.
 
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grapes

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I want to state that my PEM first started 4 months after detoxing two high heavy metals, which was terribly miserable itself with constant fatigue. That detox lasted nearly 6 months. But the first PEM incident 4 months later also occurred when my body was still quite stressed due to candida. And my body being stressed in response to anything like a detox dieoff is when I seem to get PEM the most.
 

hamsterman

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Wow, I'm happy to see others organizing their thoughts better than me. And I admit that corticosteroids have greatly improved my life, but its very important that everyone take into account the long-term risks.

I now ONLY take hydro-cortisone, since it's biological half-life is far shorter, I think < 1/4 of prednisone. The problem with Prednisone is that it stays in your system forever, and if you are older, it may have a biological half-life of up to 36 hours. The longer its in your system, the more potential long-term damage you can do... and can seriously cause problems with bone density, hypertension, etc.

I also let my general doctor know, and he closely monitors my blood-levels, glucose levels, blood pressure, etc.

I am fully ware of the risks here, but I simply can't take not being able to go out and do things with my family. It was destroying me. So doing this once a week has really helped me mentally. Not to mention, it allowed me to seriously recondition myself, which has helped me significantly on my off-steroid days.
 

grapes

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Wow, I'm happy to see others organizing their thoughts better than me. And I admit that corticosteroids have greatly improved my life, but its very important that everyone take into account the long-term risks.

I now ONLY take hydro-cortisone, since it's biological half-life is far shorter, I think < 1/4 of prednisone. The problem with Prednisone is that it stays in your system forever, and if you are older, it may have a biological half-life of up to 36 hours. The longer its in your system, the more potential long-term damage you can do... and can seriously cause problems with bone density, hypertension, etc.

I also let my general doctor know, and he closely monitors my blood-levels, glucose levels, blood pressure, etc.

I am fully ware of the risks here, but I simply can't take not being able to go out and do things with my family. It was destroying me. So doing this once a week has really helped me mentally. Not to mention, it allowed me to seriously recondition myself, which has helped me significantly on my off-steroid days.
Hi. Yes, hydrocortisone would be a better choice. But so would Adrenal Cortex if we can figure out a high enough amount. It's weaker than prescription HC.

And I learned a huge lesson yesterday. I was in my 6th day of a bad PEM crash. I was feeling a little better though thanks to high dose CoQ10, creatine and D-ribose 3 times a day. But I wasn't out of the woods yet, in spite of feeling better. In the afternoon, I went to help my husband lift 5 of those plastic sterlite boxes with stuff in them to a different area in our storage shed. I held one side, he held the other. OMG, that caused a PEM crash on top of the other PEM crash I was trying to recover from. I went to bed with the worst sleepiness and body fatigue at 7:30 pm. AND I SHOULD HAVE TAKEN MY ADRENAL CORTEX IN HIGH AMOUNTS WHEN I DID THAT!! It didn't even dawn on me. Lesson learned.
 

hamsterman

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Hi. Yes, hydrocortisone would be a better choice. But so would Adrenal Cortex if we can figure out a high enough amount. It's weaker than prescription HC.

And I learned a huge lesson yesterday. I was in my 6th day of a bad PEM crash. I was feeling a little better though thanks to high dose CoQ10, creatine and D-ribose 3 times a day. But I wasn't out of the woods yet, in spite of feeling better. In the afternoon, I went to help my husband lift 5 of those plastic sterlite boxes with stuff in them to a different area in our storage shed. I held one side, he held the other. OMG, that caused a PEM crash on top of the other PEM crash I was trying to recover from. I went to bed with the worst sleepiness and body fatigue at 7:30 pm. AND I SHOULD HAVE TAKEN MY ADRENAL CORTEX IN HIGH AMOUNTS WHEN I DID THAT!! It didn't even dawn on me. Lesson learned.
That's a very common PEM trigger. Moving things with someone else really triggers the 'fight or flight' response because your body 'prepares' for the act more than typical exertion. I've seen it happen multiple times. Sorry your going through that.
 

grapes

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That's a very common PEM trigger. Moving things with someone else really triggers the 'fight or flight' response because your body 'prepares' for the act more than typical exertion. I've seen it happen multiple times. Sorry your going through that.
Hmm. You know, I found out that I have genetic mutations that make me a naturally anxious and driven person. And it dawned on me recently that this may be contributing to having PEM. And if I'm right, I need to be on something like ashwagandha twice a day to calm myself down.
 

hamsterman

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Hmm. You know, I found out that I have genetic mutations that make me a naturally anxious and driven person. And it dawned on me recently that this may be contributing to having PEM. And if I'm right, I need to be on something like ashwagandha twice a day to calm myself down.
One thing that helped me was wearing a hear rate monitor with an alarm. It would beep whenever I passed over about 102 bpm, and that instant feedback was very valuable. For instance, one time I noticed my HR shoot up into the 120's when I was reading a 'troll' post.... but more importantly, I could 'feel' that fight-or-flight response... and instantly react to it before it got out of hand. It also taught me how to have a conversation with people without it affecting my HR too much, etc. Learning the 'feeling' of the adrenaline rush is very important, and learning how to control it in various ways is a learning process.