High-dose hydrocortisone (80 mg.) to prevent PEM - what does it feel like, or do to you?

[Mary]

I'm considering trying high-dose hydrocortisone (80 mg.) in a one-off dose prior to exertion to try to prevent PEM, as described in this thread by @Hip.

What I'm wondering is, what does 80 mg. hydrocortisone make you feel like, or what does it do to you? Does it rev you up or make you tired or what? I've never taken prednisone or hydrocortisone. Or do you not feel much of anything? that high of a dose just sounds a little scary to me. does anyone know of any dangers from this? I know long-term this would not be good, but it would be a one-off thing.

I have an old prescription for hydrocortisone I've never taken, in 5 mg. tablets - it was prescribed for 2 tablets a day - so I'd have to take 16 of them eek:!) to get 80 mg. - or maybe start with 8 and then a few hours later 8 more? I have a very long day (probably around 12 hours) coming up in January and want to do what I can to get through it as best as I can.

@Hip or anyone, any ideas? Thanks!,

 

[Hip]

I have not really experimented much with normal doses of corticosteroids in order to prevent PEM (as @hamsterman described in the corticosteroids section of the PEM busters thread).

On one occasion I tried prednisone 15 mg (equivalent to hydrocortisone 60 mg) before going out socially, as a PEM preventer. I did not notice anything in terms of effects, neither good or bad; but I really need to experiment with it more in order to gauge its efficacy as a "PEM shield" or "PEM protector". I am not a very good person to test this PEM shield effect though, as I don't get much PEM from physical exercise, I get PEM more from mental exertion such as social activity.


One thing to note is that hydrocortisone has a shorter blood plasma half-life than prednisone or prednisolone.

The plasma half-life of prednisone and prednisolone is 3 to 4 hours, whereas the plasma half-life of hydrocortisone is 2 hours. Your corticosteroid PEM shield might last for one or two half-lives; so your PEM shield should last about 4 to 8 hours for prednisone and prednisolone, and last around 2 to 4 hours for hydrocortisone.


Also note that it takes 1 or 2 hours for oral hydrocortisone tablets to reach peak levels in the blood, so when using this as a PEM shield before exertion, @hamsterman cautions that you need to take the hydrocortisone 1 or 2 hours in advance of the exertion, to give it enough time to kick in.

Prednisolone kicks in faster, taking only about 1.3 hours to reach peak blood levels. Prednisone is the slowest, taking 2.6 hours to reach peak levels in the bloodstream.


So with hydrocortisone 80 mg, it takes 1 or 2 hours to kick in, and once it kicks in, it lasts for up to 4 hours, in terms of providing protection against PEM. You could probably re-dose though to keep the PEM shield up.

With prednisolone 20 mg, it takes only about 1 hour to kick in, and it then lasts for up to 8 hours. This is what @hamsterman found. He found that the PEM protection from 20 mg of prednisolone lasted for 8 hours (but when he tried exercising 13 hours after taking prednisone, then he crashed; so clearly the protection wears off after around 8 hours).

In terms of dose equivalence, 80 mg of hydrocortisone = 20 mg of prednisolone = 20 mg of prednisone.


Note that occasional one-off use of corticosteroids like this as a PEM buster is likely safe in most cases, and can make you feel better. It can make you feel better because many symptoms of ME/CFS are likely driven by inflammatory immune activation, and as the immunosuppressive effects of corticosteroids quell this immune activation, the symptoms will then improve or disappear.

But continued daily use of corticosteroids at normal doses may make ME/CFS patients worse in the long run, as the immunosuppression may eventually let the underlying infections proliferate (after say a few weeks or months of daily use).

Though many ME/CFS patients find they benefit from long-term low-dose corticosteroids (eg 10 mg of hydrocortisone daily) without any problems, and this study found such low doses can reduce fatigue in ME/CFS. This study also found a benefit, although discovered some patients developed mild suppression of adrenal glucocorticoid responsiveness.

So it is only long-term normal dose corticosteroids (eg 80 mg hydrocortisone daily) that has major issues.

 

[Hip]

I have an old prescription for hydrocortisone I've never taken

For me, whenever I try a new drug or supplement I have not taken before, I often first take a cautious low dose (eg, a quarter of the full dose), and see how that goes before I venture up to the full dose. This is because if the drug does not agree with me, and there are side effects, they will be minimal because of the low test dose.

 

[Mary]

Thanks so much @Hip for your analysis. I actually might have access to both prednisone and prednisolone. My sister takes 5 mg. prednisone daily for RA, and my cat is on 2.5 mg. prednisolone for IBD - I imagine it's the same as the human equivalent of prednisolone. I do like the fact that the effects of prednisone and prednisolone last so much longer than hydrocortisone. I'll have to sort it out. I might even try to get a prescription from my NP.

For me, whenever I try a new drug or supplement I have not taken before, I often first take a cautious low dose (eg, a quarter of the full dose), and see how that goes before I venture up to the full dose. This is because if the drug does not agree with me, and there are side effects, they will be minimal because of the low test dose.

This is what I usually do too, and a good reminder - I tend to be very sensitive to many medications (hardly take any).

 

[Hip]

I actually might have access to both prednisone and prednisolone.

@hamsterman cautions that although both these drugs last for 8 hours, prednisone takes longer than prednisolone to kick in after you take the tablet. Prednisone takes 2.6 hours to kick in, whereas prednisolone only 1.3 hours.

So you have to be careful not to start exerting yourself too early.

If you take prednisone, you would have to wait about two and a half hours before commencing exertion, otherwise your PEM shield will not be up and active. Whereas with prednisolone the PEM shield should be fully active an hour and 20 minutes after taking the drug.

 

[Mary]

If you take prednisone, you would have to wait about two and a half hours before commencing exertion, otherwise your PEM shield will not be up and active. Whereas with prednisolone the PEM shield should be fully active an hour and 20 minutes after taking the drug.

Thank you again - very good point! Actually I just made an appointment with my doctor - I will ask for prednisolone. I was lucky to be able to get in next week before the end of the year. Usually I see a NP but she is clueless re ME/CFS. The doctor knows a little more but the last time I saw him I had to wait over 2 hours to see him past my appointment time and it was too rough. But this is so important to me right now, I'll just sit and bear it!

I get PEM from physical, mental and social exertion, as well as driving - so it will be a good test!

 

[Wayne]

what does 80 mg. hydrocortisone make you feel like, or what does it do to you?

I've only taken that much a relative handful of times, and it was quite helpful. I used to drive back and forth to the midwest on an annual basis, which is when I normally took that much. It was generally a 3-4 day trip, and the first day I would go from my normal 20 mg/day, to about 30-40mg. The second day I'd add a bit more (as needed), but usually around 50 mg+. Third day would inch me up toward 60-80. Whether I should have or not , I would combine the hydrocortisone with sipping on coffee most of the day.

You'd think it would keep me from sleeping well, with the vibration from driving, and all that coffee and hydrocortisone, but it actually seemed to have a somewhat calming effect, and I generally slept well. Some things I noticed as I got to the higher amounts:

1) My face and skin could become flushed;
2) I could get a bit of stomach upset, especially if I took it on an empty stomach (which I can do OK with taking just 20 mg/day.
And best of all...
3) on the third day, I would sort of slip into a phase of almost feeling normal, as in, the closest I would generally ever come to not feeling overwhelmed to at least some degree by ME/CFS.

And I would often feel fairly good for the next several days, even though I'd just traveled 2,200 miles+ across country, sometimes in some blizzardy conditions.

Note that occasional one-off use of corticosteroids like this as a PEM buster is likely safe in most cases

I've read that some practitioners believe that higher doses of hydrocortisone 1-2x/week is better than daily low-doses. I don't have an opinion on that, but I do believe from my own experience that taking higher doses, even as much as 80 mg, 1-2x/week would probably not do any harm. The only caveat is whether one should go from 0 to 80 in one fell swoop.

@Mary, you may want to consider doing a little experimenting in the days prior to your January challenge. You may only need half that much, or even less. And you can then get a better take on what to expect when your big day in January arrives. -- You probably are going to be in touch with other people, and I "suspect" you don't want to be looking beet red at the time.

 

[Mary]

@Wayne - thank you for all the information! That's amazing that you could travel 2200 miles and feel like a human being afterwards. And even sleep a little better - wow! I've always been afraid of corticosteroids so I've never taken one but am going to give it a try now. I will talk to the doctor and see what he recommends, keeping in mind Hip's caveat about how long the various ones take to kick in.

You probably are going to be in touch with other people, and I "suspect" you don't want to be looking beet rad at the time

Yeah, I'd rather not be beet red Experimenting as both you and Hip recommended is a great idea. I am pretty sensitive to meds so I do need to find out how I would react.

And it's very encouraging to hear that you did well with the higher doses (apart from turning red )

 

[joanierav]

hi mary. i wouldnt do it. well maybe for just one day. its a love/hate drug. some people love it and some hate it. if it was good for us, we would all be on it for our pem.

good luck whatever you do, joanie

 

[Wishful]

I have a rule about trying new drugs: don't try them before driving, or anything else dangerous. PWME have unpredictable reactions to some drugs, and you really don't want to find out that they affect your ability to drive safely.

For those of you who have used single-dose cortisol drugs multiple times: does it continue to work each time, or does it stop being effective after a few times? Full courses of cortisols stop working for some of us. Maybe it's the duration of the course that makes it stop working.

 

[Hip]

I do believe from my own experience that taking higher doses, even as much as 80 mg, 1-2x/week would probably not do any harm.

@hamsterman, who is a severe bedbound ME/CFS patient, took either hydrocortisone 80 mg or prednisolone 20 mg once weekly for a year, without any problems. Though normally bedbound, these one-off doses of corticosteroids allowed him to go the gym and do an intense cardiovascular workout once a week without getting any PEM repercussions whatsoever.

So for him, one-off corticosteroids provided a regular escape from the imprisonment of ME/CFS. Quite remarkable. And in a way quite liberating.

Furthermore, with all that cardiovascular exercise he was able to do, he managed to cure his POTS after one year. POTS is known to respond well to exercise. All that exercise did not improve his ME/CFS though (so much for graded exercise therapy).

if it was good for us, we would all be on it for our pem.

There has been no research and very few anecdotal accounts about using occasional one-off doses of corticosteroids as a PEM preventer. So I don't think anyone knows for sure whether occasional use of corticosteroids is safe for all patients. I'd like to see some researchers do a study on this.

It may well be a very clever employment of corticosteroids, one that allows ME/CFS patients the freedom to engage in vigorous exercise or physical exertion every now and then (such as once weekly). It may provide an occasional morale-boosting escape from the normal imprisonment of ME/CFS.

 

[Hip]

My face and skin could become flushed

Seems like flushing of the face is a common side effect of short-term corticosteroids:

Short-Term Side Effects of Steroids

Most people are prescribed systemic steroids for just a few days at a time and so any side effects they experience are temporary; most resolve after a few days once the steroids have been stopped. The most common side effects for otherwise healthy people taking steroids include insomnia, changes in mood or behavior, flushing of the face, an increase in appetite, and short-term weight gain due to increased water retention.

Certain underlying medical conditions sometimes worsen while a person is taking steroids. For example, someone with diabetes mellitus may have an increase in blood sugar levels. Similarly, a person who has high blood pressure may experience a rise in blood pressure readings. People with glaucoma who are taking steroids sometimes have an increase in eye pressure. Those with congestive heart failure may retain water.

Source: here.

 

[Mary]

hi mary. i wouldnt do it. well maybe for just one day. its a love/hate drug. some people love it and some hate it. if it was good for us, we would all be on it for our pem.

good luck whatever you do, joanie

Thanks @joanierav. I don't want to be on a regular course of hydrocortisone (or prednisone, etc.) I know that long-terms use is harmful, no doubt about that. I only want to see if it's something that would be effective to help prevent PEM on special occasions when I know I have to expend an unusual amount of energy.

Actually, seeing what Hip wrote about Hamsterman, makes me wonder if it might safely be taken once a week.

 

[Wayne]

Actually, seeing what Hip wrote about Hamsterman, makes me wonder if it might safely be taken once a week.

i had the same thought! Will probably give it a test run.

 

[Mary]

i had the same thought! Will probably give it a test run.

Let us now how it goes!

 

[Wayne]

the first day I would go from my normal 20 mg/day, to about 30-40mg. The second day I'd add a bit more (as needed), but usually around 50 mg+. Third day would inch me up toward 60-80.

Wanted to mention that I tapered down in about the same manner as I increased my dosages (instead of stopping abruptly). That is, when I finally got home, I reduced it by about 20 mg/day for 2-3 days. -- I'm not saying that's necessarily the best way, but for me it seemed like a good strategy to not shock my body by coming off of it too quickly.

When I read the book "Safe Doses of Hydrocortisone" by William Jeffries many years ago, he advised those doing low-dose hydrocortisone to start upping their amounts a day or so prior to the day they would be doing unusual exertion. That might be one other thing to consider; perhaps start with 10-20 mg two days prior, 20-40mg 1 day prior, and then see how much is needed on the day of exertion. I would guess less than if there was no preparation in the days prior.

None of these numbers are meant to be definitive in my thinking. Just sharing some thoughts that make sense to me, always understanding that things like this have to be determined based on everybody's unique individual situation.

 

[Hip]

That might be one other thing to consider; perhaps start with 10-20 mg two days prior, 20-40mg 1 day prior, and then see how much is needed on the day of exertion.

Although it seems like a reasonable idea, it's possible that might do more harm than good: if you were taking one-off corticosteroids on a regular basis, such as once a week, then a taper in and taper out protocol would increase the amount of time per week that your immune system is suppressed, which in turn increases the amount of time per week that your underlying infections can proliferate.

With the half-life of prednisolone being 3 to 4 hours, a single 20 mg dose will be more-or-less out of your system 12 hours later, which means that with this single dose you only spend a pretty small amount of time with your immunity turned down.


This article does say that tapering off is necessary to prevent withdrawal symptoms; but it would seem that this is only when corticosteroids have been taken daily for more than a few weeks:

If you take prednisone for more than a few weeks, your adrenal glands will decrease the natural production of cortisol. If you stop prednisone abruptly before production is restored, the lack of hormone can trigger an array of withdrawal symptoms.

So the need to taper will not apply to a one-off single dose of corticosteroids.

 

[Wayne]

So the need to taper will not apply to a one-off single dose of corticosteroids.

I agree 100% on that, especially if the one-off single dose is done on a weekly basis. -- My limited experiences were more based on an "annual" basis, so the tapering made sense to me. But as I start experimenting with a weekly high dose, I expect to dispense with the tapering, most likely on both ends. That should work fine for me, since my body has already gotten used to taking 20mg/day for going on 20 years now.

 

[toyfoof]

Are corticosteroids only available via prescription? (I'm in the US.) This is a tempting idea, except for the part where I tell my doctor I want to experiment with steroids. He might be cool with it, but I have to be really careful with what ends up in my medical records right now since I'm waiting on my disability to be approved.