Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Anyone try higer doses of prednisone.

Discussion in 'General ME/CFS Discussion' started by gregh286, Apr 2, 2018.

  1. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Few weeks ago i had to fly geneva motor show with a group of friends.
    It was a christmas pressie from my better half but in all honesty i brave it a lot and she knows i love cars.

    The thought scared the s**t out of me cos everyone knows how cfs is...predictably unpredictable....and phew 6 hours x 2 days around a car show is pretty intensive even for a mild to moderate cfs guy.

    I went all in.
    80mg of prednisone day before travel and 80mg the travel day. I flew around the show.....light as a feather i was. 2 days was enough and i didnt need a taper. Prednisone bought on online pharmacy. GP wouldnt agree to that considering cfs is seen as a somataform disorder.

    Yes i know its a demon drug but my god its effective.
    Suffice to say it wore off about 36 hours after final dose.

    Anyone.else.try this dose range with success.
    Obviously not a solution.....but to be somewhere for a one off in tip top form....its pretty darn good.
     
    Misfit Toy, ljimbo423 and ErdemX like this.
  2. Wishful

    Wishful Senior Member

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    Prednisone (normal dosage) had that effect on me the first time I tried it. After four or five days of no effect, I was disappointed by it being yet another 'doesn't work' treatment. The next morning, I too was bouncing with energy, feeling completely healthy again. That faded after tapering down. I got another prescription, and had the same effect after two days. My doctor wouldn't let me have any more, but I found that cumin had the same effect. Then the cumin stopped working after a couple of weeks. I did manage to get another prescription for prednisone months or years later, and it had no effect. I talked my doctor into letting me try a higher dosage (80 mg sounds familiar), but that had no effect on my symptoms either. I haven't bothered to try it since then. I did try cumin occasionally, to see if it would start working again, but only recently did I discover that while it didn't reduce the baseline ME symptoms, it did effectively block PEM.

    Since cumin did work the same as prednisone for me at first, you might want to give that a try, since it's simple, cheap, and safe, and of course, doesn't require a pesky prescription. :) See the thread 'Effective PEM Blocker?' in the symptoms, PEM sub-forum. Maybe it won't work for you, but maybe it will. A teaspoon of ground cumin (regular, not black) seems like a good starting point.

    It sure does feel wonderful when something actually gives a remission from ME/CFS, even if it's only temporary. It shows that it's not an irreversible disorder. We just don't know yet how to flip that switch over permanently.

    Has anyone bothered yet to compile a list of research papers showing that ME/CFS is a real medical disorder rather than a somataform one? Something to show a doctor who wants to dismiss it as imaginary? Not that long-term prednisone is a good idea, but there are things that doctors could help us with if they accepted that it was a real disorder.
     
  3. Thinktank

    Thinktank Senior Member

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    I've been on 40mg for IBD, never again. It made me aggressive, manic and i lost my libido for 6 months or so.
    I was like a real life hulk.
     
  4. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I was on 40 and felt great. I didn't stay on it but for a week but going off of it sucked.
     
  5. jpcv

    jpcv Senior Member

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    I tried 60 mg for 3 days and it didn´t change anything for me.
    Yes, I´ve had that feeling also, when I started my low carb/low lactose diet. It lasted for a few days and it disapeared completely, though my gut feels better now.
    Lcarnitine made me feel better , not like a remission, but a gradual feeling of improvment that has not disapeared so far.
     
  6. Wishful

    Wishful Senior Member

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    L-carnitine didn't do anything for my baseline symptoms, but did allow me to eat meat, or rather the fatty acids in meat, without triggering an increase in symptoms. I don't know whether the supplemental carnitine was responsible, but I gradually lost the increase in symptoms from fats.
     
    jpcv likes this.
  7. starlily88

    starlily88 Senior Member

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    Baltimore MD
    I loved your post - what a great idea!! Surprised one can get Prednisone online. If you don't mind, could you reply or PM me - with name of online pharmacy you used - so I know it is the real stuff.

    I never took steroids - but last 4 weeks got real sick - breathing, swallowing, swelling thyroid or throat, temps, still sick but getting there.

    Put on Prednisone tablets Took 4 tabs/4 days so 40 mg total (10 mg tabs) Then 3 tabs/3 days Then 20 mg for 2 days then 10 mg (1 tab) for 3 days. I am on my 7th day.

    So after my first 4 days at 4 tabs/day or 40 mg/day - I could not believe how I felt.
    I had no brain fog, could concentrate, I actually could do reading.
    Had positive outlook on life. Completed tasks I haven't done in awhile - like cooking chicken soup, throwing things away without worry, cleaning up. Before taking Prednisone 7 days ago - doing one bill, even by phone was mammoth task.

    I put on music/danced - I never have desire since last few years.
    I was confident like I used to be - was not manic - but had feeling of being "normal" - it is so wonderful.

    So wondering how did you find out this puts us in remission?
    What a great idea - because I can never depend on getting anywhere - had my reunion, had no idea if I would go.
    My girlfriend wants me to visit them in Spain - could I take Prednisone before trip?
    But it would be a week visit - so you say it wears off in 36 hours?

    Looking forward to hearing from you.
    I am very sad to have to stop this drug in 5 days - and be lifeless again.

    I am going to get my ACTH test done to see if my cortisol levels work at all, and my htypothalmus/pituatary gland tested, along with adrenals.
    There are drugs to take - to make these work - i have been told - Florinef or hydrocortisone.

    Thanks Starlily88
     
  8. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Getting prednisone online is a dawdle, its as easy to order as a birthday card.
    This is 2018, you can buy semtex, crystal meths and hand grenades if you are so inclined.

    tbh, 40mg of pred will relieve CFS but not totally, and in moderate or severe, I would say 40mg has maybe unnoticable effect, hence no one really thought it was any good, dose too low.

    I estimate I need 60-80mg a day for total symptom relief. Thats a pretty high dose, but it shows you how badly affected we are, and Im a mild PWME.
    Moderates/Severes may need double that.

    When they discover CFS origin, they won't believe how we functioned.
    inhousepharmacy.vu
    no prbs, all the stuff is original from NZ, HK etc,
    yea, wears off 24-48 hours after last dose.

    heres the most interesting part.
    Before pred i am mildish, maybe a 6-7.
    Can play 18 holes golf walking but wrecked after. I wear fitbit and HR is normally 120 ish, just by walking. So, totally wrecked cos round golf=marathon to anyone else. Heart rate is X2 to walk briskly.

    NOW, on pred, on thursday HR only 75, was a walk in the park, not tired at all after it. no shock there, heart was barely worked out.(My normal resting HR around 60, so a 25% increase in HR to maintain cardiovascular homeostatis).

    So, whatever happens massive effect to improving AEROBIC threshold, by what mechanism I would love to know.
    I could prove this EASILY on Vo2 Max tests on 2 consecutive days, one with pred, one without out.

    So, we are not permanently broken, but very broken at same time.

    How did I know it would work? Because in past I always seen uptick in energy + aerobic capacity after immuno suppressors, so, pred was obvious choice.
    Obviously, not the ideal solution, but it can pull me out of holes and allows me to function normally when i "need" to.
     
  9. starlily88

    starlily88 Senior Member

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    Baltimore MD
    Wow, fascinating, who would have thought this! Gets me so mad because we know this works, therefore Pharma can indeed make a CFS drug to work for us - hopefully without long term trashing of bones.


    Thanks for the inhouse pharmacy VU - I got my Motillium from there all the time (for my Gastroparesis) - they did not sell much of anything else back long time ago.

    I agree that no one will know how any of us functioned - but many of us are housebound, and sleep all the time.
    So do you have to take immunosuppressive drugs - my girlfriend had 6 transplants, and takes them.

    The Prednisone increases I think our cortisol - which for most of us is quite low. Without cortisol is much inflammation - causes pain, exhaustion. I have brain swelling/inflammation like most of us - so it affects cognition, etc. I am going to test my ACTH if my dr will order it - to see the state of my pituitary gland and hypothalamus gland in our brain, which makes the call for cortisol.
    Also testing my adrenal glands - because if damaged, they won't make the cortisol.

    So do you allow yourself to take Prednisone on a regular basis?
    I would take it to go to Spain - but I don't think I would even guess what dose to take, and I have osteoporosis, and high blood pressure (which could be from problems with adrenals, etc.

    My autoimmune disorders, have more than one - have wreaked havoc with most of my organs, producing other diseases - so I am not remotely mild - the Prednisone just helps my brain/thinking, motivation, ability to organize, and abiltiy to have joy and actually plan an event with a friend.

    Thanks so much for your input. Interesting that you are brave enough to use it often, but I think it is better to
    have less life - and get a better quality - because what is the use of not living when we are alive??
     
  10. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    a
    My cortisol was textbook ok. I think our adrenals are fine mostly, they would have discovered this before now, but sure worth to test yours. My adrenals are 100%, tested many times.
    Regarding the high blood pressure, my resting is 140/80, not great, spikes to 200/90 under light exertion with no pred, when HR up at 120 level, its like I havent dilated at all.

    Heres the kicker, with pred, resting BP drops to 120/75. under exertion only goes to 150/80.
    Whatever causes CFS its quite dangerous to our vascular system, putting our cardio system under enormous duress, and i think the mechansim of cell protection stops us from more and more damage. Maybe its receptors on blood vessels or something like that.

    Regarding dose, well you know your body better than I. I can tolerate any supplement and dont have any other health issues, my body still robust even though i live with CFS, so i know i can play with good size doses.

    No, i only take when need to, its just a crutch for me.
    I not happy to take it, but its a total beneficial pay off for me.
    I know people on steroids for 30 years, there are horror stories about pred, but in my case, they just work really well.
    I think I read a last study that 80mg a day for 2 weeks doesnt suppress immune function,,read that somewhere when I was doing research on it.
    I suggest speak to GP if your in doubt or concerned. Im a bit "gung-ho" anyway, so can take bold steps at times.
     
  11. starlily88

    starlily88 Senior Member

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    Baltimore MD
    Now I know where you get your gung ho attitude - Northern Ireland and Churchill (I have read every book on him, he was incredible).
    I got CFS at around your age - and I first had Mono, but did not get better. I slept all the time in beginning.
    But I could walk to girlfriend's and have dinner for hours.

    I still jogged and worked out like a fiend almost every night, wanted to keep my heart going, and help my brain.
    Even when I got breast cancer I did just fine.

    I think getting PTSD 6 years ago did me in. Nothing seems to defeat this, the eye movement therapy freaked me out.
    But luckily medical MJ is now legal in my state = so signed up last year, and have to get Dr certification now.
    The Oil vape pen should help me. What a great place you live in - it is so very beautiful.

    I suggest that you do a bone scan from time to time - to make sure you don't get Osteopenia which then leads to Osteoporosis. I exercised, ran, weights, horseback, tennis my whole life - and I still got it in my 40's (think because I couldn't drink milk, there was no lactaid then, plus I was skinny.

    Good luck, very interesting about your BP - excellent................
     
  12. Wishful

    Wishful Senior Member

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    Since you're talking about prednisone as an immunosuppressant, I should add that after prednisone stopped working for me, I convinced my doctor to let me try cyclosporin, an even stronger immunosuppressant. It has no effect on my symptoms. That made me think it wasn't prednisone's suppressing ability, but something else. Since it doesn't work for me anymore, I can't experiment with it.

    Maybe my ME was at a point where suppressing the immune system was enough to switch the positive feedback loop off again, but after the two trials of prednisone, reducing the immune system activity was no longer enough.
     

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