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MZB - 21 Jan 2007 20:30 GMT

Hi Susan:

I've really enjoyed reading your posts and always appreciate your input (to
me and to others as we all learn a bit from the experience of others).

However, I also hope you don't mind a bit of constructive criticism (or feel
free to reject it, of course-- but I feel this needs to be said).

Your posts always carry a sense of certainty in your facts, but too often
you make these sweeping absolute statements. The one thing I've learned by
perusing this group for many years is that symptoms and remedies vary from
sufferer to sufferer. What works for one doesn't work for the other. If this
was an exact science, there probably wouldn;t be much of a newsgroup.

Two examples from my recent thread:

1) "Steroids used chronically will always worsen, not improve the condition
they're used for, along with overall immune competence."

Now, that flat out isn't true. If you change the word "always" to
"sometimes" perhaps that MIGHT be true. I have Crohn's Disease in addition
to sinus problems. My CD is not severe (relative to many others) but for
those with severe CD and other diseases steroids like prednisone are
life-savers although they can, sadly, substitute many equally severe side
effects for the disease itself. Again, "can" is an operative word here, and
we are talking about systemic steroids. In my thread I am talking about
nasonex which is not mainline systemic. It's degree of systemic involvement
is debatable but there is no doubt that it is far less than the oral
steroids.

2) In talking about medical professionals you said "They're all wrong. I've
spent months researching the phenomenon,..."

Again, such an arrogant, absolute statement. There ARE NO absolutes here.
There is plenty of research going on and as is often the case in diseases
they may come up with conflicting results or simply tweaking/refining
previous results. But to say "they are all wrong" because of your research
is again... well...absurd.

Susan, it appears that your run of cards has been terrible. I personally
welcome the knowledge/information you provide based on your experience which
admittedly has been horrible, to say the least.

But, again, try not to be so sure. At least for me, I think part of aging
and getting wisdom is the realization that there are fewer absolutes than we
originally thought.

Finally, again, please don't take this personally. I hope you will just
think about what I said. We are all sufferers or we wouldn't post here!!

Mel

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Susan - 21 Jan 2007 22:35 GMT

> Hi Susan:
>
[quoted text clipped - 14 lines]
> 1) "Steroids used chronically will always worsen, not improve the condition
> they're used for, along with overall immune competence."

> Now, that flat out isn't true.

Uh, well, yeah it is. Steroids *always* suppress immune function,
that's how they work. They will eventually, usually within 2-3 weeks,
suppress the HPA and thereby reduce the body's own endogenous anti
inflammatory capabilities.

I don't know how much research you've done into endocrinology at this
point, or into negative feedback, etc.

If you change the word "always" to

> "sometimes" perhaps that MIGHT be true.

Um, I didn't make it up, I've read it in every single citation on long
term use of any form of steroid, including topical and inhaled. That's
what all the warnings in the inhaler literature your doctors are
ignoring are there for.

I have Crohn's Disease in addition

> to sinus problems. My CD is not severe (relative to many others) but for
> those with severe CD and other diseases steroids like prednisone are
[quoted text clipped - 4 lines]
> is debatable but there is no doubt that it is far less than the oral
> steroids.

Inhaling something into your nose *is* mainlining it. It's much more
efficiently absorbed than orals. That's why such tiny doses of inhaled
steroids can cause such havoc.

> 2) In talking about medical professionals you said "They're all wrong. I've
> spent months researching the phenomenon,..."
>
> Again, such an arrogant, absolute statement.

I think what's arrogant is not doing an equal amount of research before
saying so. My doctor is right when he says I know more about my
conditions and meds than any doctor can ever find the time to learn.

>>There ARE NO absolutes here. <<

Yes, there are. Steroids are *absolutely* immunosuppressive and
*absolutely* suppress the HPA axis. The variable is to what degree this
occurs.

> There is plenty of research going on and as is often the case in diseases
> they may come up with conflicting results or simply tweaking/refining
> previous results. But to say "they are all wrong" because of your research
> is again... well...absurd.

Clearly, you've avoided reading the fine print.

> Susan, it appears that your run of cards has been terrible. I personally
> welcome the knowledge/information you provide based on your experience which
> admittedly has been horrible, to say the least.

Um, not not my experience, my research, which was spurred by my
experience.

> But, again, try not to be so sure. At least for me, I think part of aging
> and getting wisdom is the realization that there are fewer absolutes than we
> originally thought.
>
> Finally, again, please don't take this personally. I hope you will just
> think about what I said. We are all sufferers or we wouldn't post here!!

Mel, please note that I didn't merely share what I'd learned about the
effects of prolonged steroid use, I also shared the various schemes for
continuing to use them whilst minimizing the ill effects.

IMONSVHO, it would be very foolish not to try to employ them.

Susan

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MZB - 22 Jan 2007 02:52 GMT

Susan:

Again, your original quote :

"Steroids used chronically will always worsen, not improve the condition

>> they're used for, along with overall immune competence."

You keep insisting this is correct. I am NOT arguing with steroid effect on
immune competence. I am arguing with the first part of your quote. Steroids
do NOT AT ALL always worsen the condition they are used for. In fact, a
disease like CD is often thought of as an autoimmune disease (like rheum.
arthritis). It's an attack by the immune system on the body. In addition to
steroids, immunomodulators like immuran and 6-MP are employed.

So, there are times when steroids will GREATLY improve the original
condition.

Now, of course, we are in a sinus newsgroup. I assume we do want to keep our
immune system strong and not weaken it (as per CD). But others have posted
here that the nasal steroids have been helpful long term, and the literature
does seem to indicate that nasonex can be taken long term (at least I seem
to remember something to that effect). In fact, the Cleveland Clinic seems
to indicate that "Intranasal steroid sprays are safe for long-term use, and
there is little evidence to indicate they cause significant systemic side
effects....Triamcinolone acetonide, budesonide, fluticasone propionate, and
mometasone tend not to cause any significant side effects, presumably
because they have lower systemic bioavailability (particularly fluticasone
and mometasone) and are used in low dosages."

So, there are times when steroids will GREATLY improve the original
condition.

And, no, the nasal steroids are certainly NOT the same as mainlining. In
general, we try NOT to have long term use of the oral steroids (eg:
prednisone). From what I've read, the medical establishment does NOT seem to
feel the same exact way about the nasal sprays. I personally feel uneasy
using it but I really doubt that if I used it for a month straight I would
have similar symptoms to being on prednisone. In fact, I would NOT. There
are some very distinct features associated with prolonged pred. use (moon
face, etc.).

Anyway, for you to maintain that all doctors are wrong appears presumptuous.

But, I do appreciate your input and I certainly am being cautious about my
use of nasal steroids.

> x-no-archive: yes
>
[quoted text clipped - 95 lines]
>
> Susan

Reply to this Message

Steven L. - 23 Jan 2007 04:02 GMT

> x-no-archive: yes
>
[quoted text clipped - 25 lines]
> Uh, well, yeah it is. Steroids *always* suppress immune function,
> that's how they work.

No, that's not entirely how they work. The anti-inflammatory effect
involves different receptors and biochemicals than the immunosuppressive
effect. It's complex, but different metabolic processes are involved.
Steroids, both the ones produced by our own body and these prescription
meds, have all kinds of metabolic effects all over our bodies. Not just
in the immune system.

For example, one injection of cortisone or other steroid can result in
an almost immediate reduction in an inflammatory allergic reaction (such
as hives), even though the immediate effect on the immune system is nil.

But the part that "MZB" is probably objecting to most, is the part where
you said "Steroids used chronically will always worsen, not improve the
condition they're used for...."

That is simply not true, and millions of asthmatics will tell you that's
not true. Steroids have been absolutely life-saving, not only because
they prevent the onset of asthma attacks which could be fatal, but
because we now know that repeated asthma attacks and untreated
inflammation can eventually lead to so-called "airway
remodeling"--permanent structural damage to the airways. Depending only
on bronchodilators to snap you out of an asthma attack will not prevent
this long-term gradual insidious damage.

Having said that, physicians are loathe to warn their patients in
advance about the side effects and risks--not just for steroids but for
virtually any other prescription drug. It's hard enough to get patient
compliance without scaring them off with some rare side effect that they
might not experience. It's a tough call, but if I allowed myself to be
fearful of all the side effects listed on the package inserts, I
wouldn't take any prescription drugs. I wouldn't take some OTC drugs
either.

> Inhaling something into your nose *is* mainlining it. It's much more
> efficiently absorbed than orals.

That is not true. If that were true, then we wouldn't have to take oral
medications at all--everything would be available in nasal spray form.
There are many variables involved in the extent to which a medication is
absorbed thru the nose or lungs (such as particle size and mucociliary
clearance and mucus), and the extent to which a medication survives the
digestive process and is metabolized with its active metabolite entering
the bloodstream. You just can't generalize like that.

In fact, gram for gram, the nasal steroid spray Flonase has more potent
anti-inflammatory activity than prednisone, yet Medrol's effects on the
body are much greater because of the high rate of absorption.

The package insert for Flonase states that:

"Indirect calculations indicate that fluticasone propionate delivered
by the intranasal route has an absolute bioavailability averaging less
than 2%. After intranasal treatment of patients with allergic rhinitis
for 3 weeks, fluticasone propionate plasma concentrations were above the
level of detection (50 pg/mL) only when recommended doses were exceeded
and then only in occasional samples at low plasma levels....

"In another trial, the potential systemic effects of FLONASE Nasal Spray
on the hypothalamic-pituitary-adrenal (HPA) axis were also studied in
allergic patients. FLONASE Nasal Spray given as 200 mcg once daily or
400 mcg twice daily was compared with placebo or
oral prednisone 7.5 or 15 mg given in the morning. FLONASE Nasal Spray
at either dose for 4 weeks did not affect the adrenal response to 6-hour
cosyntropin stimulation, while both doses of
oral prednisone significantly reduced the response to cosyntropin."

> >>There ARE NO absolutes here. <<
>
> Yes, there are. Steroids are *absolutely* immunosuppressive and
> *absolutely* suppress the HPA axis.

So what?

For example, aspirin is "absolutely" an anticoagulant, prostaglandin
inhibitor, and a gastric irritant. Yet millions of heart disease
patients take low-dose aspirin every day for that anticoagulant effect,
and arthritics swear by aspirin too. They are aware of the downside of
these effects; in fact some of them do get peptic ulcers. It's better
to get a peptic ulcer than a sudden heart attack. The former is a lot
easier to treat than the latter.

And in the case of steroids, it's better to risk HPA axis suppression
than to end up with permanent lung damage from airway remodeling. Until
they find an actual cure for asthma, that's the state of the medical art
right now.

Signature

Steven D. Litvintchouk
Email: sdlitvin@earthlinkNOSPAM.net
Remove the NOSPAM before replying to me.

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Susan - 23 Jan 2007 14:20 GMT

> No, that's not entirely how they work. The anti-inflammatory effect
> involves different receptors and biochemicals than the immunosuppressive
[quoted text clipped - 10 lines]
> you said "Steroids used chronically will always worsen, not improve the
> condition they're used for...."

Yes, I know they work on more than one level, they also suppress the
HPA, which is why I'm even bothering to have this discussion. Anything
that suppresses your HPA will cause you to produce less endogenous anti
inflammatory steroid, therefore requiring more exogenous steroid,
thereby compromising immunity more, etc.

> So what?

If you don't know what, there's really no point.

Susan

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