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Prednisone got me out of bed, should I continue?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Woolie, Feb 11, 2015.

  1. Woolie

    Woolie Senior Member

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    I've read a few posts on this forum about short courses of prednisone/prednisolone giving people a complete remission from their ME symptoms while on it. But I was always wary about the long term use.

    However, I've recently had a severe flare of my illness that's kept me in bed for the last two months. And since I'm about to lose my job, a doctor friend of mine recently suggested pred as a last ditch option.

    The improvement was rapid. I started with 20mg in the mornings, and the left started to kick in that evening. Now in my third day, I'm back at work and even walking the dog! Doc friend here wants me to stay on 20mg for 7 days, then edge down, 1mg at a time each day till the symptoms return, then edge back up again the next day (this protocol, she says, she modelled on polymyalgia rheumatica). And so on, aiming for a stable condition on a dose under 10mg, only for as long as needed.

    Since I'm a relapsing-remitting case, we hope that I will be able to eventually ease off it altogether and just keep another rx for the next flare.

    My doc friend thought the instant and marked response I showed to pred was very informative in itself, suggesting strong support for an inflammatory process underlying my MECFS.

    CFSers always been warned off prednisone, because of the side effects (weight gain, osteporisis, moon face). And I've heard some here have a had bad crash after coming off it, and even tapering might not be enough to avoid that. But I do think you have to weigh costs and benefits. For me:

    Costs
    : weight gain, osteoporosis (actually, both are risks of being bedbound anyway, so not much to lose there). Possible trouble further down the line when I try to get off it.
    Benefits: can work, can exercise, also gives my body a break from the relentless inflammation, which I'm sure can't be good for you. Plus mental health benefits of getting up and about again, spending time with partner, kids.
    The equation is still positive for me.

    Its a hard one to assess. Of course, doctors who think our symptoms are psychogenic, or simply not as severe as we claim, are unlikely to recommend this treatment under any conditions. But what about those who see the illness as inflammatory/automimmune? Would they still be so cautious?

    Would love to hear anyone's thoughts/experiences.

    @Jonathan Edwards, if you have time, I wonder if you might have any general comments on the potential pros and cons of this type of treatment for MECFS? (just generally, of course).
     
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  2. alex3619

    alex3619 Senior Member

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    @heapsreal is the guy to ask about this. I do not know much about it. What I do know is that 5mg per day or less is considered pretty safe. This kind of drug at high doses has long term consequences, but lower doses are very safe in most people. There is considerable evidence, though much of it anecdotal, that low dose cortisol supplementation, or equivalents like prednisone, are unlikely to cause issues.

    High dose is considered, from my reading, to be 40mg or more. Low dose about 5mg or less. 20 mg is midway, so its hard to say. I think its probably OK if you are a responder to use higher doses during acute events, but I think lower doses are considered safer in the long run.

    Maybe others can say more. There are lots of us who have tried this type of therapy.

    One last point. Its likely that we have two cortisol issues. One is a shifted circadian release, high when it should be low, and low when it should be high. The other is a very mild deficiency, but this is now being examined and mechanisms for cortisol resistance in us are being researched. This has to do with an as yet unpublished claim of excess beta cortisol receptors in us.
     
  3. snowathlete

    snowathlete

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    I took prednisolone at 40mg on a 5mg a week taper, twice, last year for ulcerative coltitis. It did nothing for me, the UC or the ME/CFS. Given the side-effects and risks, I wouldn't want to take anything like 20mganything but a low dose for any length of time, but as you appear to be benefiting it's worth seeing if you still benefit after coming off it, or on a much lower maintainence dose. But obviously your doc will know a lot more about it than me. Something else you might want to ask is if you could have some other disease (either concurrent, or a misdiagnosis) that might be the reason for your improvement.
     
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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    prednisone is 4-5 times stronger than hydrocortisone, and prednisone has a longer half life.

    Physiological doses of HC are 20-30mg, studies have shown 5-10mg to be safe in most, this would equal 1-2mg of prednisone?

    The high dose treatment isnt a long term type of treatment but generally used by docs to control someone with a high amount of inflammation such as an asthmatic with a chest infection etc

    Hc may be useful if your cortisol levels test low, but generally it about getting cortisol levels within optimal normal range, but i would also mention having optimal dhea levels as they tend to balance each other out. I would probably consider pregenolone before using HC or prednisone for adrenal dysfunction.
     
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  5. anciendaze

    anciendaze Senior Member

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    One possibility overlooked in the discussion above is that your cortisol may be poorly regulated, even if amounts are close to normal. I keep hearing things which suggest that many patients are quite sensitive to prednisone, as many are to other drugs which affect endocrine function. Caution is appropriate, and low doses for others may be quite substantial for you.

    In another type of endocrine disease I know a patient who has been measured as 30x as sensitive to insulin as normal. Injecting typical doses intended for diabetics would literally kill him quickly. Similar variations in sensitivity are another kind of difference in individual patients which is very badly neglected in most clinical practice.
     
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  6. Woolie

    Woolie Senior Member

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    Thanks everyone for your replies. @anciendaze, apparently, my cortisol levels are fine (but sure, could be poorly regulated).

    Yea. @heapsreal, the big dose I've started on is not intended as a cortisol replacement therapy, but rather for its anti-inflammatory and immunosuppressive effects.

    The idea is that my ME symptoms (a lot of flu-like malaise in my case) are caused by inflammation. My doc friend thinks ME could well be an autoimmune illness. And that AI illnesses might therefore be used as a model for treatment. She has modelled my treatment course on that for polymyalgia rheumatica (not what I have, just a model).

    Interesting, though @snowathlete, that it did nothing for your ME on those high doses! Maybe there is something fundamentally different about our underlying conditions?

    @alex3619, interesting to hear lots have tried this type of therapy, but maybe most for cortisol replacement purposes, maybe fewer at doses intended to be anti-inflammatory? Still keen to hear others' experiences if you're out there.
     
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  7. Kati

    Kati Patient in training

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    @Woolie no kidding you are feeling great on Prednisone.

    I was prescribed Hydrocortisone 20 mg in morming, 10 mg in afternoon) because my morning cortisol was at a critical low and I felt horrible. I expected that it would give me a boost, however it did nothing. Worst is that when
    I tapered it was most horrible. And it lasted for weeks, if not months.

    Thread very, very carefully. Osteoporosis and bone destruction are not to be taken lightly, and weight gain is the same as it brings even more morbidity.

    Prednisone is not the solution.
     
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  8. CBS

    CBS Senior Member

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    @Woolie

    I wanted to share my experience with hydrocortisone. Before doing so, I want to second @Kati 's cautious approach. Corticosteriods are not to be used lightly. Also keep in mind that the dosing of hydrocortisone and prednisone are not the same (@heapsreal 's comments).

    I apparently am the exception to the difficulties experienced with hydrocortisone and I have an enormously supportive endocrinologist who is keeping a close eye on everything. Very long story short, lots of funky endocrine values. Funky thyroid values so docs tried Synthroid and I crashed miserably. Years later an endo wanted to try Synthroid again (even funkier thyroid values) and I said no way. Not without ruling out adrenal insufficiency. Six months of testing later with a clearly positive metyrapone test (can have serious complications like cerebral hemorrhaging in the wrong patients) and I gave hydrocortisone a shot (10 mg AM and 5 MG at noon).

    Within hours of first dose I began to feel better than I had in four years. That was the first day of a SIX YEAR remission (95% recovery, return to work, marriage, traveled the world). At the end of that six years I was over doing it (law school, remodeling our house) and things began unraveling. Both my doctor and I thought that I had simply been misdiagnosed with CFS when I actually had central adrenal insufficiency, Life was a bit more complex than that. Keep this brief, let's just say that I have a number of endocrine issues (all treated by my endo) layered on top of my ME.

    I haven't had any weight gain or moon face given the physiologic dose that I am taking. I do have regular bone density testing. My baseline test (in 1998) showed that even before starting the hydrocortisone I had mild osteopenia. Those values have stayed constant and we remain vigilant.

    Bottom line - I'm likely the exception as hydrocortisone was a game changer for me but my relationship with it is guarded and at the same time, I am now committed as doubt I've retained any residual cortisol production.

    And yes, nearly everyone would feel better after starting on 20 mg of prednisone per day.
     
    Last edited: Feb 11, 2015
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  9. Kati

    Kati Patient in training

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    I would like to add a bit more about the tapering of Prednisone. From my experience as a RN and also my own experience with hdrocortisone, as much as you are feeling a bit high (in your case, feeling good) now, when you taper, you feel really low, very depressed and sometimes even suicidal. It was terrible for me. It lasted for months. we tapered over 2months. In retrospect I would do it over 3, it was too fast.
     
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  10. Sidereal

    Sidereal Senior Member

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    @Woolie, it's great to hear you've improved so much. Is it possible you have an undiagnosed autoimmune disease? You say you don't have polymyalgia rheumatica but I'm just wondering if you've had a proper workup by a rheumatologist. I've heard of women with PR being told they have "nothing" or fibromyalgia until someone decided to give them a trial of prednisone and they got better instantly and never looked back.

    Like @snowathlete I was put on prednisolone for a comorbid autoimmune disease and it did nothing for my ME symptoms (though it did help a bit with my other symptoms). I was able to go from mostly bedridden to going out for 20-30 minute walks a couple of days a week. The side effects were terrible. Coming off of it cold turkey was the most harrowing experience of my life. For me the risk-benefit ratio didn't add up seeing as I still couldn't work or do anything useful even from home but if I were in your situation, my assessment would have been different.

    I don't think the symptoms we perceive as flu-like and inflammatory are actually inflammation in the classic sense of the word. All kinds of anti-inflammatories including steroids have been tried over the years by various clinicians who try to help us. Doctors have been experimenting on us for decades. None of these drugs have consistently worked for this patient population. There is no consistent evidence of alteration of immune markers like cytokines in the blood. CRP and ESR tend to be normal or on the low side in the majority of patients (although there are always exceptions). Muscle biopsies don't show inflammation hence the lovely moniker "psychogenic rheumatism". So we're left with more esoteric mechanisms like microglial activation/low-grade "neuroinflammation" as suggested by the Japanese, or some kind of B-cell mechanism apparently affecting NO production/regulation of vascular tone which Fluge/Mella are now investigating. Etc.
     
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  11. Woolie

    Woolie Senior Member

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    Thanks @Sidereal, good advice. After 25 years, I'm had my fair share of blind alleys from formal testing, but maybe worth another look just in case? Its interesting that not everyone here gets the relief from the pred, even at similarly high doses, I expected that would be universal.

    I've never heard of "psychogenic rheumatism", that's a new one to add to my list! Still, the pred seems to be a broad spectrum immunosuppressive drug (a blunt object really), so I expect it will kill any sort of immune activity, not just inflammation, strictly speaking. That is, any immune activity, good or bad. There's my biggest worry right there.

    Thanks too @Kati, I will certainly take care with the tapering, its useful to know how these things affect us in particular (my doc can't tell me that).

    @CBS, I think pred is 4x more potent than hydrocort, so I guess I'm taking the equivalent of 80mg hydrocort right now, at least till day 7 when I start to taper down. The aim is to get to 7.5mg, which I suppose is still 30mg hydrocort, so still much more than you were having. The best scenario would be to slowly come off it over a few months, without relapsing, but I just don't know what'll happen yet.

    I'll be sure to repost when I have news.

    Thanks again.
     
  12. A.B.

    A.B. Senior Member

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    Beware of overdoing it. I found low dose hydrocortisone to be helpful for feeling more energetic and better all around but it didn't prevent crashes. I don't take it anymore due to weight gain and concerns about long term side effects.
     
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  13. Sidereal

    Sidereal Senior Member

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    If we got universal relief from high doses of prednisone, then this disease would not have become so controversial in the first place. We'd have been carted off to rheumatology or neurology back in the 1980s/1990s when people were experimenting with steroids to see if the muscle symptoms improve. But they don't, at least not in the majority. We don't respond to any biological treatment in a consistent fashion, that's the problem.
     
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  14. snowathlete

    snowathlete

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    Could be we don't have the same illness, or that we do but with different underlying factors, or just different disease stages, or that we just don't respond to the drug the same way.

    Inflammation is definitely a problem for me, and has been since I had the illness for about 3 years, before that when people talked on here about inflammation I didnt know what they were really talking about, then I started experiencing it and now totally get it. Inflammation is not simple, there are lots of different inflammatory pathways, and they are not all fully understood yet, and most drugs are quite broad acting and not specific enough, so I think there will turn out to be confirmation of inflammation in the disease. I don't go along with the idea of it being low level either. I think that once pin pointed it will be found to be pretty high in most people.

    I've been experimenting with other antiinflammatories this year and found a few things that I think are helping me. I'm focused on inhibiting NF-KappaB at the moment in order to treat the UC, with some success. I got there by accident really, but glad I did as I am now improving and may be able to avoid taking a class 1 carsinogen as a result which is what my gastro wants to try next. How much is NF-KappaB a part of ME/CFS too, I don't know yet.

    Regardless of that, it's really good that you have found something which is working and I hope it continues to do so. Goes to show that it is worth trying things.
     
    Last edited: Feb 12, 2015
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  15. bertiedog

    bertiedog Senior Member

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    Just to get some facts here, if you do need more cortisol as I obviously did, then taking nearly 6mg Prednisolone since 2003 has given me NONE of the symptoms you describe. When tested a few years ago with a DEXA scan I was told I had the bones of a 30 year old despite the fact I was 63 at the time!

    I also stayed on very low dose estrogen and also some T3 in my thyroid meds plus I have taken good supplements for the past 10 years so my conclusion is that if one needs a normal amount of cortisol and one's body isn't able to produce it then it certainly hasn't harmed me taking on average 6 mg Prednisolone for nearly 12 years.

    Pam
     
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  16. CBS

    CBS Senior Member

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    Sounds like we have had some similar experiences but I have begun to suspect that we are a unique sub-group of ME patients.
     
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  17. justy

    justy Donate Advocate Demonstrate

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    I have had a LOT of problems with prednisolone and unfortunately for me it has never touched any of my symptoms apart from brining my lymph nodes down. pred actually makes me feel much worse!!

    I have had immune suppression issues in the past when tsking it and high dose inhaled steroids for lungs a few years ago - I then had about three years of being very ill all the time with flus and colds and bugs and terrible hormonal issues.

    I occasionally need to take it for lungs, but the last time I tired had steroid psychosis at only 5 mg, even though I have taken it before.

    I now know that I have chornic bacterial infections - which might explain why every time I have stopped a course my M.E has worsened - last time it never recovered. Please make very sure you do not have Lyme or Cpn or any of the other common infections people have in M.E
     
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  18. bertiedog

    bertiedog Senior Member

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    It does get confusing because I have been diagnosed through Infectolab with borrelia (strongly positive on the LTT test) plus Ehirlichia and yet I have done well on Prednisolone. However I have never taken more than 7 mg at any time and that would only have happened about 5 times ever so perhaps its more to do with high doses?

    The main thing that I find with taking a steroid and thyroid meds is that I bounce back quite quickly, usually after a couple of days I can start to recover from a downturn and feel better. I have also slept so much better since on treatment and can handle stressful situations hugely better. It still amazes me what I can handle these days compared to what life used to be like prior to hormonal treatment.

    Pam
     
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  19. Woolie

    Woolie Senior Member

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    @snowathlete, I've been following the research on NF-KappaB too. I actually tried a few drugs and supps that were supposed to be inhibitors - quercetin, curcumin and statins. But they didn't make a difference for me. Maybe not powerful enough? Or only one of a number of problems. Will be interested in what you discover.
     
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  20. Woolie

    Woolie Senior Member

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    Wow, for some people - mainly low doses - it seems to have been a turning point!

    @justy, I was expecting more people to report your type of experience. That is, worse off after than before steroids. That's what I really fear. What's Cpn?
     

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