Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

[Hip]

On the ME/CFS scale, I was at about a 30, now I'm about 35, possibly a bit higher.

When you say you are 30 on the scale, are you referring to the Karnofsky scale detailed in my post on the mild, moderate and severe levels of ME/CFS? That would then make you a very severe ME/CFS patient.

Severe patients are mostly bedridden all day and night, but may get up for a few hours a day. Whereas very severe patients are more or less totally bedridden (they will often trigger PEM even by just walking to the bathroom).

If you are very severe, then that makes it all the more remarkable that you are able to function at 100% and go to the gym on the day that you take corticosteroids.

I no longer have POTS. Its completely gone.

Exercise is known to be good for POTS, so perhaps your weekly cardiovascular workouts facilitated by corticosteroids put your POTS into remission.

 

[Hip]

Just as a side note, I've been using Prednisone once a week for about a year, and I've found its absolutely impossible to induce PEM while Im on these corticosteroids. I've really taken this to the limit.... doing crazy cardio... things that would normally cause severe multi-week PEM... and each time... nothing. I've also accidentally done a 'double-blind' test, when I accidentally took the wrong medication, and had severe PEM afterwards.

What is the dose of prednisone you take before your cardiovascular workouts? Is it 20 mg of prednisone, equivalent to the 80 mg of hydrocortisone you also use before workouts?

And what would you say is the optimum time to take these drugs before a workout? You mentioned that you take hydrocortisone 30 minutes before a workout; is 30 minutes in advance the optimum time for hydrocortisone, would you say?

And what about prednisone, how long in advance of an exerting event do you normally take this?

 

[drob31]

What is the dose of prednisone you take before your cardio workouts? Is it 20 mg, equivalent to the 80 mg hydrocortisone you also use before workouts?

And what would you say is the optimum time to take these drugs before a workout? You mentioned that you take hydrocortisone 30 minutes before a workout; is 30 minutes in advance the optimum time for hydrocortisone?

And what about prednisone, how long in advance of an exerting event do you normally take this?

It's interesting because having a positive response to hydrocortisone or prednisone is the same reaction that people who use it for autoimmune conditions get. It would just be lowering inflammation and quieting the autoimmune attack (hypothetically).

 

[hamsterman]

When you say you are 30 on the scale, are you referring to the Karnofsky scale detailed in my post on the mild, moderate and severe levels of ME/CFS? That would then make you a very severe ME/CFS patient.

Severe patients are mostly bedridden all day and night, but may get up for a few hours a day. Very severe patients are more or less totally bedridden (else they will trigger PEM).

If you are very severe, then that makes it all the more remarkable that you are able to function at 100% and go to the gym on the day that you take corticosteroids.


Exercise is know to be good for POTS, so perhaps your weekly workouts facilitated by corticosteroids put your POTS into remission.

Yes, I was at the bottom... about 18 months ago... after 10 years of spiraling down, I was almost entirely in bed... only occasionally getting up... but that was also when I was constantly crashing... and when I had gone through really severe deconditioning. at this point, I was starting to shop around for wheelchairs.

I still wouldnt use 'severe' since many CFS/ME are 15s and 20s, who will crash by just walking a few steps. But I realize there are many in this forum that are much higher than me, and are somewhat functional, and can still hold jobs.

Before I started on the corticosteroids, I started in on pacing with a heart rate monitor. And that stopped the crashes for the most part. Once they stopped... I re-evaluated myself at 35, then Prednisone workouts pushed me up to... maybe around 40, where I am now. And the fact that the POTS is gone... well that has totally changed things.. I can now stand in lines... which I wouldn't dare do in the past.

Yes, when I take prednisone, everything that ails me pretty much dissapears, but that won't happen for everyone. That's partially because I have auto-immune issues that are always present.. (other than ME). and its also because, like many here, I have low cortisol levels.. especially in the am... so the prednisone pushes it way up. However... I can duplicate that with much lower levels (5mg)... but I'm not protected from PEM unless I take an immunosupressent dose (20mg)

 

[hamsterman]

It's interesting because having a positive response to hydrocortisone or prednisone is the same reaction that people who use it for autoimmune conditions get. It would just be lowering inflammation and quieting the autoimmune attack (hypothetically).

Yes, exactly right. Which is why I think it may be possible that this technique may only work for roughly half of us. Based upon Dr. Young's research... https://www.healthrising.org/blog/2017/07/15/immune-subsets-chronic-fatigue-syndrome-younger/, roughly half (or maybe less) of ME patients have cfs/me from Autoimmune/Autoinflammatory issues. So this may not work for those who have cfs/me from infections. (the other 50%). The 3 other 'ME'ers I know who use prednisone as a pem-shield were in the AI category. But I could be wrong... I'm just completely guessing here.

 

[hamsterman]

What is the dose of prednisone you take before your cardiovascular workouts? Is it 20 mg of prednisone, equivalent to the 80 mg of hydrocortisone you also use before workouts?

And what would you say is the optimum time to take these drugs before a workout? You mentioned that you take hydrocortisone 30 minutes before a workout; is 30 minutes in advance the optimum time for hydrocortisone, would you say?

And what about prednisone, how long in advance of an exerting event do you normally take this?

I am pretty large, (6'4", 200lbs), so I take 25mgs... but 20mgs would probably be better for most. And 20 has worked for me in the past. Also, I take 25mgs, because I use it for the entire day... after the working out... I spend the next 5-6 hours doing my social visits for the week.

I am a bit scared to test to see how close I can get to the time I take it. But I generally 'feel' prednisone after about 45 minutes. But I typically start the workout roughly an hour after taking it. As for the Hydro... I was told as soon as 30 minutes by my endocrinologist... the one time I did the workout after hydrocortisone... I did it about 35 minutes after taking it.

I am just guessing on how long hydro works...based upon its biological half-life compared with Prednisone... I really havent pushed it. But with prednisone... i've pushed it to 8 hours afterwards... which made me nervous... but I still didnt crash. I once pushed it to 13 hours afterwards... and I crashed. for the lat 50 weeks... I've used a timer... and I stop everything after 7 hours... and havent crashed once when I follow this routine.

 

[Learner1]

I use hydrocortisone in physiologic replacement dosing, 10/10/5mg. I take it prior to exercise with BCAAs, d-ribose, and NADH, and find it helps.

However, I recently had a bone DEXA scan along with some other labs that show I'm actively losing bone. Though there are other factors involved in my situation, steroid use (hydrocortisone, prednisone, dexamethasone, Solumedrol) has been pointed out by several docs as counterproductive to healthy bones.

So, if one is using any of these steroids, it would be wise to employ some bone conserving strategies.

 

[hamsterman]

I use hydrocortisone in physiologic replacement dosing, 10/10/5mg. I take it prior to exercise with BCAAs, d-ribose, and NADH, and find it helps.

However, I recently had a bone DEXA scan along with some other labs that show I'm actively losing bone. Though there are other factors involved in my situation, steroid use (hydrocortisone, prednisone, dexamethasone, Solumedrol) has been pointed out by several docs as counterproductive to healthy bones.

So, if one is using any of these steroids, it would be wise to employ some bone conserving strategies.

Yes, my doctor actively monitors quite a few things. Long-term use of steroids can wreak havoc on your body. Maybe I should take preventative bone strengthening supplements as well. My weekly prednisone dose is pretty low though. 25 mgs/week, less than 4 mgs per day. But I may be able to get by with a slightly lower dose. I also take BCAA, creatine, and sometime d-ribbose right before exercising as well.

 

[gettinbetter]

D-ribose - 5 grams, three times daily

I tried D ribose as suggested above and it was too strong I had heart pounding and it did not help with PEM
I use maybe five grams the whole day in little amounts here and there
One very big benefit of 1/2 to a gram taken at sleep time is it makes it much easier to get to sleep.

 

[lllamamom]

Unfortunately I have not found much that reduces this mental PEM, though some supplements help a bit.[/QUOTE]

I have struggled with brain fog at times for years (pre-ME). A wonderful physician friend said, casually, "have you tried citicholine?" Bingo! Over the counter, at least in the US, doesn't seem to have negative side effects. It's now apparently being used more for those with ADD, however, to my mind, <when it's working> brain fog is brain fog. If I have to do any mental exertion, one in the AM usually gets me through to about 4 PM, when I'm physically shot any way

As for prednisone, when I first got slammed with ME, the doctor put me on a long taper, starting at 60mg/day. Months later, I was standing on a street corner in NYC, crying over the phone to the doctor, to please just let me quit. The side effects--irrational anger, weight gain, puffiness, dis-coordination--were worse than the pain.

 

[lllamamom]

One very big benefit of 1/2 to a gram taken at sleep time is it makes it much easier to get to sleep.

Oh, trying this tonight. Thank you for the tip!

 

[drob31]

Citicholine increases the density of dopamine receptors.

Could it be receptor antibodies from an autoimmune condition that are causing the issue? Dopamine receptor antibodies?

 

[gettinbetter]

Oh, trying this tonight. Thank you for the tip!

You are welcome
Did it work?

 

[lllamamom]

You are welcome
Did it work?

Yes it did! Thank you! Going to try it again tonight--had to go to town (50 miles each way), and several stops. The signs are that I'll need help with sleep tonight, darn it

 

[lllamamom]

Gettinbetter, sadly, I was in too much pain for the D-ribose to apparently help. I resorted to my beloved CBD oil, and actually got 5 hours uninterrupted sleep!

 

[hamsterman]

Just an update on large-dose hydrocortisone PEM Sheilding. I've used it 4 more times in the last 2 months, including once where I took it about 5 minutes 'AFTER' I was started a conversation with someone. All 4 occurrences, were sure-fire PEM triggers. Each time, zero PEM. (One was later at night, which of course caused insomnia, but at least no PEM).

A few nights ago, I had a stressful 'sure fire' PEM trigger, and I decided NOT to take the hydrocortisone, because it was late, and I just wanted to see if I was 'cured', and NOPE... the pem came exactly when it was supposed to... .and it was brutal.

I've been working on and off on a 'How to' guide to corticosteroid assisted PEM shielding and re-conditioning... its kinda coming slow. Hopefully, I can get it up in the next couple weeks.

 

[Hip]

I've been working on and off on a 'How to' guide to corticosteroid assisted PEM shielding and re-conditioning... its kinda coming slow. Hopefully, I can get it up in the next couple weeks.

I look forward to reading it.

 

[frozenborderline]

My naturopath got me on these adrenal supplements that had bovine adrenal glands. they seemed to help but also hurt in a way, I have the theory that it's just giving you stress hormones that corticosteroids mimic, without helping your body replace them. I had the most substantial energy I'd had for awhile, nothing dramatic (no exercise) but I could actually think and write with vigor. However I was also on LDN and experienced panic attack like symptoms. I think the adrenal cortex contains cortisol and other stress hormones. my cortisol may be low but I'm not sure that corticosteroids/adrenal glandulars are sustainable. I would also wake up with a headache which is a classic stress reaction.

 

[frozenborderline]

That's interesting. I did a bit of Googling, and found this article which says: "Unlike monohydrate, creatine hydrochloride does not require a loading phase". So that's another advantage of the creatine hydrochloride form.





Have you tried the 1200 mg x 2 megadose "PEM Killer" protocol, which was reported to kill off within 24 hours a period of PEM that would have normally lasted 10 to 14 days?

there was one study that showed NADH + coq10 supplementation helped cfs patients. Now I actually bet it was the coq10, i've had bad reactions from NADH and think that the oxidized form, NAD+, or even niacinamide, is better than the reduced form. too bad they didn't study them separately.

is there data on safety of coq10 at those higher doses? i've only tried up to 400 mg

 

[Hip]

is there data on safety of coq10 at those higher doses? i've only tried up to 400 mg

I found this study which says 3,000 mg of Q10 daily for 8 months was found to be safe.