The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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List of Supplements and Drugs Which Reduce PEM (Post-Exertional Malaise) Crashes

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Hip, Dec 21, 2016.

  1. Hip

    Hip Senior Member

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    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.



    Exercise is known to be good for POTS, so perhaps your weekly cardiovascular workouts facilitated by corticosteroids put your POTS into remission.
     
    Last edited: Dec 1, 2017
  2. Hip

    Hip Senior Member

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    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?
     
    Last edited: Dec 1, 2017
  3. drob31

    drob31 Senior Member

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    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).
     
  4. hamsterman

    hamsterman Senior Member

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    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)
     
  5. hamsterman

    hamsterman Senior Member

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    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.
     
    TreePerson likes this.
  6. hamsterman

    hamsterman Senior Member

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    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.
     
    Hip likes this.
  7. Learner1

    Learner1 Professional Patient

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    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.
     
    Hip likes this.
  8. hamsterman

    hamsterman Senior Member

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    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.
     
    Learner1 likes this.

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