Critical of past research: cortisol studies

Woolie said:
I completely understand where you're coming from, @unicorn7. I certainly also feel that people underestimate the degree of disability and suffering PwMEs experience, and they don't take that into account when weighing up pro's and con's of medications.

But I've been there, and corticosteroiods give with one hand, and take away with the other. You can end up worse than when you started. And yes, a person who takes a low enough dose might avoid some of the worst of the side effects, but they'll miss out on any benefits as well, because their body will soon adjust by making less cortisol itself. Then when they try to stop, they can be worse off than before they started.

I think we imagine that people with "legitimate" diseases get access to all these drugs because people take them seriously (e.g. RA, MS). But I'm noticing more and more that even in these diseases, the focus is often on stopping measurable decline, and the person is left pretty much to their own devices to deal with debilitating fatigue and malaise (or worse, given psychological treatment). Pretty much like us.
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That is sometimes the feeling I get, that this disease is still not "legitimate" enough to even think about giving any medication.

That is exactly the reason I woud like to see a lot more research on these kinds of low hanging fruits. We don't know.We don't know the side effects, we don't know what it does, we don't know why it works when it works.

I am now weighing the pro's and con's of my N=1 case without any knowledge whatsoever. Maybe I am giving away long term health, for short term gain, I don't know. I would love to know more, to make a better decision.
 
unicorn7 said:
So, that pretty much makes everyone a fringe-doctor?
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That does not follow. It is true that a lot of doctors are pretty irrational or evidence-free in their decisions about certain things but across the board most follow well-founded practices for most things. A minority of physicians practice on the basis of theories outside the consensus - what I would call fringe. Similarly a minority of professors at university hospitals use unconventional practices. University centres may to some degree be closer to the mainstream in their practice but that is offset by the fact that professors are by nature researchers pursing new approaches, so the minority of fringe professors is not so small a minority. In my department I overlapped with about seven professors, two of whom were distinctly fringe.
 
unicorn7 said:
I do agree that the adverse effects of higher doses of prednisone are pervasive and long term, that doesn't hold doctors back with literally any other disease.
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It very much holds doctors back. When I left rheumatology I had stopped prescribing corticosteroid to almost everyone. For RA it was limited to the very old whose life expectancy was so limited that the benefit of better mobility was worthwhile. I remember when two nurses tried to lift an RA patient up on her pillows in bed. Her steroids had made her bones so fragile that the nurses broke both arms. She died within a few days. In the 1970s that sort of thing was commonplace.
 
I wil rephrase and just say that I have no way of knowing who is a distinguished professor and who is a fringe doctor then.
Sometimes things will be fringe or experimental now and common knowledge in twenty years.
I can also imagine that I just have a different understanding of the word fringe :D, as English is not my first language.

Jonathan Edwards said:
It very much holds doctors back. When I left rheumatology I had stopped prescribing corticosteroid to almost everyone. For RA it was limited to the very old whose life expectancy was so limited that the benefit of better mobility was worthwhile. I remember when two nurses tried to lift an RA patient up on her pillows in bed. Her steroids had made her bones so fragile that the nurses broke both arms. She died within a few days. In the 1970s that sort of thing was commonplace.
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Is there a big difference between the UK and the Netherlands? I have a few people around me with reumatological diseases and they all got prednisone as the first and sometimes the only treatment. Sometimes short term, sometimes long term with medications against osteoporosis with it. I thought it was still the fist line of treatment for a lot of diseases?
 
unicorn7 said:
I wil rephrase and just say that I have no way of knowing who is a distinguished professor and who is a fringe doctor then.
Sometimes things will be fringe or experimental now and common knowledge in twenty years.
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Yes, it is a problem that needs to be confronted.
Most fringe things slip into the trashcan - 98% I would say.

unicorn7 said:
Is there a big difference between the UK and the Netherlands? I have a few people around me with reumatological diseases and they all got prednisone as the first and sometimes the only treatment.
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There may be. Corticosteroids remained fashionable in the US much longer than in the UK. In some countries GPs use a lot of low dose corticosteroids. In the UK they are used for polymyalgia, RA in old age and lupus but not much else. Polymyalgia is a bit like ME in that nobody ever does any research into it. The adverse effects of the steroids are considerable but nobody is making much effort to find a safer treatment.
 
Oh that's interesting, as my whole family has polymyalgia and my mum got two years of prednisone for that. She got rid of it though. A friend of the family has it as well and is kept on low dose prednisone and extra for flares.
I have a cousin that has RA and she got prednisone right away, but she might be on other medication now.

In the Netherlands, corticosteroids are not used much by GP's. I used it a lot as a veterinarian thought. Bit of the same problem, we don't have much else as veterinarians..
 
Jonathan Edwards said:
It very much holds doctors back. When I left rheumatology I had stopped prescribing corticosteroid to almost everyone. For RA it was limited to the very old whose life expectancy was so limited that the benefit of better mobility was worthwhile. I remember when two nurses tried to lift an RA patient up on her pillows in bed. Her steroids had made her bones so fragile that the nurses broke both arms. She died within a few days. In the 1970s that sort of thing was commonplace.
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My own experience bears out what Jonathan has said. I have a very rare autoimmune disease (relapsing polychondritis) for which corticosteroids are unfortunately the mainstay of treatment. My rheumatologist is amongst the top in her field and she will not prescribe long-term corticosteroids (even small doses) to a patient unless absolutely necessary. As in, without them the patient will suffer permanent tissue or organ damage and/or premature death. Or in a situation like the one Jonathan described. My disease meets the description of the former.

I have been taking daily corticosteroids (Prednisone) for almost 3 and a half years. My rheumatologist is adamant that we keep my corticosteroid dose as low as possible due to both the immediate and long-term side effects. I've found that a small increase in my daily dose makes me feel and function better, but the risks are too great to justify it. I must continue to take the smallest dose possible that prevents my disease from damaging my organs and/or killing me anytime soon. My rheumatologist is adamant about this.

I recently went thru a terrible flare-up of my disease in which my ability to breathe normally was greatly affected thus making it necessary for me to temporarily take a larger amount of corticosteroids than I've ever taken before (and it wasn't even that big of a dose) and the side effects were immediate and VERY unpleasant. My heart rate increased, my blood pressure went up, I had terrible acid reflux, I was unsteady on my feet and dizzy, insomnia, immediate weight gain, and so on.

After this experience I am better able to understand just how important it is that I take the smallest dose possible even if slightly more makes me feel a bit better. I am lucky in that my normal dose does not cause me any noticeable side effects in my day to day life, but in the back of my my mind I know it's very possible that it may in time cause me to develop diabetes, osteoporosis, etc.
 
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Jonathan Edwards said:
It very much holds doctors back. When I left rheumatology I had stopped prescribing corticosteroid to almost everyone. For RA it was limited to the very old whose life expectancy was so limited that the benefit of better mobility was worthwhile. I remember when two nurses tried to lift an RA patient up on her pillows in bed. Her steroids had made her bones so fragile that the nurses broke both arms. She died within a few days. In the 1970s that sort of thing was commonplace.
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Jesus thats horrible.. I mean a lot of things in life are, but thats still pretty crazy
 
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