Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Take Prednisone for one day only?

Discussion in 'General Treatment' started by Patrick*, Apr 22, 2015.

  1. Patrick*

    Patrick* Formerly PWCalvin

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    I have a dilemma.

    I am one of those rare ME patients who's functionality is high enough for the time being that I maintain a job (barely). I'm an attorney. Ever since getting ME in 2011, I've been lucky with the timing of trials. I've never had a trial that coincided with a crash. I've been in relatively functional shape whenever they came around - which is rare - maybe once a year on average.

    My luck seems to have run out. This Friday I'm due to present a client's case in arbitration and I'm in a significant crash (relatively, for me). Brain fog, sore throat, limb twitches, uncoordination, stinging eyes, swollen lymph nodes and general inflammation.

    I've over-prepared for the arbitration to the point where I could probably present this case from a hospital bed ... in a coma. ;) So the situation is not so dire that my clients won't get good representation (they will), but I think it's going to be a very long and utterly miserable day.

    I am confirmed to be immune compromised in several ways: Low NKC function, tested many times; Low CD57; Low IGG subclass 3; candida problems, etc.... All tests out of range.

    I happen to have some Prednisone that I thought I would never take due to immune suppression. It was prescribed last week, and I filled the prescription just in case. What if I were to take Prednisone for a single day, on Friday, just to tide me over for the day? That's all I need - just one day of reduced inflammation.

    1. Do you think 1 day's worth (Edit: 40 mg, not 60 like my original post stated) would be dangerous to an immune compromised person?
    2. Do you know any alternatives that might buy me one day of better functionality, even if I have to pay for it a little bit afterwards?

    I take full responsibility for my final decision. I'm not relying on anyone's advice, I'm just looking for others' experiences and knowledge base.

    Edit: I hope it isn't insensitive to post about a problem that some patients might wish they were in a position to have.
     
    Last edited: Apr 23, 2015
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  2. adreno

    adreno PR activist

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    A single dose, or day, of steroid use usually do not present any problems. I would consider only a quarter of that dose, though. 60 mg pred is the equivalent of 240mg HC.
     
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  3. ukxmrv

    ukxmrv Senior Member

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    I take Predislone when I need to be at an important doctors appointment or other things that I don't want to miss. Although I get terrible PEM after it does help on the day.

    In my case I need to take it quite early as I get very bad morning symptoms and can easily faint if I move too quickly or throw up. I've never taken 60mg. The most I have ever taken is 40 which was too much for me. 10-20 depending on the amount of boost I need.

    One of the drawbacks of the Pred is that you may have problems falling asleep on the day that take it.

    Sometimes I take a small dose the day before a big event in the morning and then a larger dose on the actual morning I need it. I can take Pred for a week in some cases before the terrible crash occurs but I don't do this because the crash can be very, very long.

    On my own cost/benefit analysis it works out for me.
     
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  4. Patrick*

    Patrick* Formerly PWCalvin

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    Thank you Adreno and ukxmrv for the valuable insights.
     
  5. Crux

    Crux Senior Member

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    The thing about pred or cortisol is that its activity is much more vast than anti-inflammatory.

    It modulates epinephrine, and could lower it, which could slow thinking processes.
    If you need to be quick, then a high dose might not be good. ( Personally, I find cortisol relaxing.)

    Also, a dose that high could make someone irritable. High cortisol wastes potassium, zinc, and other minerals that are calming.

    I would think that in a stressful situation-- court room-- cortisol should rise naturally, but if yours doesn't, then that could also impair thinking.

    When I have an appointment, etc., I usually take 5mgs. of hydrocortisone to withstand the stress. 1mg of prednisone is equivalent to 4mgs of cortisol. ( If the stressor is great, like infections,etc., then I start to stress dose.)
     
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  6. Sushi

    Sushi Senior Member Albuquerque

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    @Patrick* Yes, cortisol is tricky. I recently had mine tested as I had been taking a medication that can deplete it. The results came back extremely low. But, any attempt to replace it--even with tiny doses--spiked my BP, overstimulated me, then crashed me. My doctor said that, having been low for a long time, I was likely oversensitized to it.

    So, if you suspect that your cortisol is low, you might have become oversensitized and have an unexpected reaction.

    An alternative that I have used when I have to "perform" for a short period is a very low dose of Adderall. But again, you want to have some experience of how you respond to medications like this before trying them when you really need them.

    Best wishes with this,
    Sushi
     
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  7. Crux

    Crux Senior Member

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    Yes, cortisol is tricky, @Sushi,

    It can lower potassium like nobody's business! I've read accounts of people, even with primary addison's disease, having hypokalemia after stress dosing cortisol.

    I found it hard to believe because they usually must restrict potassium, but, there you go, it's one strong hormone.
     
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  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Here's my 2 cents. Dr. Chia advised us never to take steroids unless we were dying, as the immune suppression gave the viruses a dangerous growth surge opportunity.

    When I look back at when my son took dramatic turns for the worse, 3 out of the 4 times were following prednisone usage. It was a high dose tapered over 5-10 days, not just one day, like you are considering.

    How do you respond to caffine? It seems like it would have fewer side effects. In my mind a major PEM episode from overdoing it while hopped up on caffine would be much better than a downturn caused by virus proliferation.
     
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  9. deleder2k

    deleder2k Senior Member

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    If you have low IgG subclass maybe IVIG is something for you?
     
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  10. Starfive

    Starfive

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    For a future one day snap out of it med, my experience has been good with a newer version of Provigil called Nuvigil. Designed primarily for narcolepsy. The PEM factor goes with it so I only take a low dose when I have to really be somewhere other than home in bed.
     
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  11. xks201

    xks201 Senior Member

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    the whole chia steroid fear is totally bogus. chia has no clue about corticosteroids if he is proclaiming that bs. take it for a day or however long if it helps (you could have low free cortisol even if total cortisol labs show normal). this is where saliva cortisol testing can be more accurate. Just take like a quarter of the dose you mentioned. Taking all that will probably make you puff up and crap.
     
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  12. rosie26

    rosie26 Senior Member

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    I wouldn't recommend taking a high dose of Prednisone for a first time. I would never want to touch it again personally, I had an awful experience with taking just 5mg once. Although, I was in my first year of severe ME and my body was experiencing full-blown ME - the frightening continual high-gear thing but also the crushed exhaustion at the same time, that would not abate. Prednisone exacerbated and ramped me up to even more unbearable levels - I hate to think how I would have fared with a much higher dose.

    Even now at moderate level I would never want to try Prednisone again. I explained what happened to my doctor and was told that Prednisone makes you either sad, glad or mad, I don't know if there are more than those. I wish you well on the day. Let us know how your day went and I hope you can find a solution.
     
    Last edited: Apr 23, 2015
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Instead of prednisone, start with pregnenolone 5 to 10mg. Its much safer and can use it long term to help improve all hormonez
     
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  14. *GG*

    *GG* Senior Member

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    I didn't know that viruses have been found to be the source of ME/CFS/SEID?

    So, I don't think I would worry about taking HC for that reason. Looks like you got lots of feedback Patrick.

    GG

    PS Best of luck on your dealings on Friday. I worked for 10 years while ill. Only 30 hours per week for the most part, so I have no ill will towards people who can hold onto a job! I just wonder what kind of price we are paying for doing such a thing?
     
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  15. Patrick*

    Patrick* Formerly PWCalvin

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    Thank you all for the feedback. I considered caffeine and/or a small dose of Adderall, but the problem is that both of those tend to increase my HR and give me a dry mouth. In some circumstances that's OK, but I've found in court those are not good things. Nonetheless, I appreciate those suggestions.

    Based on the various opinions above, both for and against, I think I'm going to see how I feel tomorrow morning. If it feels like I can get by without Prednisone, I won't risk it, or I'll take a tiny crumb. If I'm utterly miserable, then I might take it.

    P.S. I was wrong about the dose above. I was prescribed 20mg pills, and the recommended dose is two of those per day. If I take it, I'll start with one pill only. If the effect is good, I might take the second one later in the day.
     
    Last edited: Apr 23, 2015
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  16. Patrick*

    Patrick* Formerly PWCalvin

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    Side note, I had to chuckle at the image of your muscle-bound avatar combined with a post defending steroids. lol
     
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  17. hamsterman

    hamsterman

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    I know this is an old post, but it caught my eye. I also use Prednisone for this purpose... ( special events that are impossible without it.) I just had my annual family vacation, and I did 2 days, back-to-back 20 mgs... and felt perfect during the 2 days... I drove the whole time, carried luggage, went on a nature hike (my kids were in shock to see this). I'm now in the obligatory post-Prednisone PEM, (PPP, lol), but am not feeling horrible... maybe because I didnt push too hard while on it... or maybe my new LDN routine helps out with it.... not sure. But I've never felt long-term consequences from a 1 day Prednisone routine... just the 1 day PEM afterwards. But 4-5 days is of course totally different... since your body has time to adjust to it.... that can cause weeks of PEM-like horror... even with careful tapering.
     
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