Discussion:
Nasal corticosteroids w/o Benzalkonium chloride?
(too old to reply)
n***@nono.com
2009-01-14 16:41:36 UTC
Which nasal corticosteroids do not have Benzalkonium chloride in them?
n***@nono.com
2009-01-14 20:29:46 UTC
Susan,

Thanks for your quick reply. I went to my otolaryngologist today and he
ended up prescribing Rhinocort AQ to me. Wow, it's expensive, compared
to my Flonase (generic). $50 copay vs $25 for the Flonase.

I am not familiar with HPA axis suppression. What is it? It seems like
following a schedule like you suggest would be easy enough. What are
the possible complications of going off the nasal corticosteroids for a
week - possibly a backslide into the condition you're trying to prevent?
What's worse? Ahhhh...so many questions! :-)

Thanks again,

Andy
x-no-archive: yes
Post by n***@nono.com
Which nasal corticosteroids do not have Benzalkonium chloride in them?
AFAIK, all but Rhinocort.
BK is a problem, but not the only one. You want to avoid HPA axis
suppression by nasal steroids, too. You can get the benefits while
minimzing the risks by using them only for 3 weeks on, then one week
off, and using them only in the a.m. (suppresses for 12 hours) and not
at night (suppresses for 24 hours).
HTH.
Susan
Susan
2009-01-14 21:57:14 UTC
x-no-archive: yes
Post by n***@nono.com
Susan,
Thanks for your quick reply. I went to my otolaryngologist today and he
ended up prescribing Rhinocort AQ to me. Wow, it's expensive, compared
to my Flonase (generic). $50 copay vs $25 for the Flonase.
I am not familiar with HPA axis suppression. What is it?
It's a very damaging side effect of steroid use, even very small amounts
over time. By taking breaks from a steroid and using it only once per
day in the a.m. you can avoid the worst outcomes. Best to use steroids
only for acute administration, not as a chronic or maintenance
treatment, and to get allergy desensitization to reduce nasal inflammation.


It seems like
Post by n***@nono.com
following a schedule like you suggest would be easy enough. What are
the possible complications of going off the nasal corticosteroids for a
week - possibly a backslide into the condition you're trying to prevent?
What's worse? Ahhhh...so many questions! :-)
I guess I hope that you're being offered more than just steroids for
your condition? Is it an acute onset related to an infection? Is there
a blockage that needs fixing? Is there inflammation that needs antigens
tested for and allergy shots for? Are you irrigating, taking anti
biotics if infected?

You don't want steroids to be your main/only line of defense, just an
adjunct when you're acutely ill.

Eventually, the steroids cause a backslide by suppressing your immunity
both locally and systemically, and by lowering your body's production of
its own anti inflammatory steroids. And don't believe any doctor who
tell you that nasal steroids don't go systemic or suppress, they do,
there is nothing more efficient for getting a drug into the blood stream
than inhalation or mucosal contact.

Susan
n***@nono.com
2009-01-14 22:55:57 UTC
x-no-archive: yes
Post by n***@nono.com
Susan,
Thanks for your quick reply. I went to my otolaryngologist today and
he ended up prescribing Rhinocort AQ to me. Wow, it's expensive,
compared to my Flonase (generic). $50 copay vs $25 for the Flonase.
I am not familiar with HPA axis suppression. What is it?
It's a very damaging side effect of steroid use, even very small amounts
over time. By taking breaks from a steroid and using it only once per
day in the a.m. you can avoid the worst outcomes. Best to use steroids
only for acute administration, not as a chronic or maintenance
treatment, and to get allergy desensitization to reduce nasal inflammation.
Again, thanks. He told me to take two pumps once a day in each nostril
(works out that I do this in the mornings). However, maintenance is
exactly what he's going for with it.
I guess I hope that you're being offered more than just steroids for
your condition? Is it an acute onset related to an infection? Is there
a blockage that needs fixing? Is there inflammation that needs antigens
tested for and allergy shots for? Are you irrigating, taking anti
biotics if infected?
You don't want steroids to be your main/only line of defense, just an
adjunct when you're acutely ill.
I've been through 3 different rounds of allergy shots over the years. I
can say that I am better than when I first started them, but still have
problems. 4 years ago, I had septoplasty to correct a deviated septum
and at the same time, had an opening added to my maxillary sinuses. I
really wish I had done more research before going in for the surgery.
This is subjective, but I think I am no better off than I was before the
surgery.

Main symptoms - near constant post-nasal drip, sore throats fairly
often, frequent sinus pressure, and really thick mucus (lately, mostly
clear).

I've been using a Neilmed bottle to rinse my sinuses for the last few
months (finally tossed the waterpik). The last 2-3 times I've gone in
for a sinus infection, I received antibiotics...but only 10 day rounds.
I believe it was Augmentin the last time. Not sure they ever do the
trick. I keep seeing that to be effective, rounds need to be at least
twice as long. Last time, he also prescribed a Medrol does pack. Wow -
that made things feel great...until the rounds were finished.

OK, back to what he suggested today:
* Continue nasal corticosteroid. Had been using Flonase (generic), but
am switching to Rhinocort AQ.
* Use AYR gel at night (something I have used in the past, but not
lately).
* Mix 6 Afrin pumps in a bottle of Ocean (or similar) saline mist, and
use 4-5 times a day. This threw up a huge red flag for me. I've read
about rebound problems with Afrin. He said there was good possibility
of that, if used at full strength, but not at the level he suggests
here. I also asked the pharmacist about this and he said similar things
as the doctor. What do you think about it?
* Continue saline rinse.
* Take guaifenesin/PSE in morning and just guaifenesin in evenings
(sudafed keeps me awake) to thin the thick mucus. Does this stuff work
well? It's been prescribed to me several times in the past. The
guaifenesin/PSE combo used to be dirt cheap when it was an Rx, but now
that it's available OTC it's really expensive.

I don't think I've ever had so much prescribed in one go around. I'm
not quite sure what to think. Do these seem reasonable?
Eventually, the steroids cause a backslide by suppressing your immunity
both locally and systemically, and by lowering your body's production of
its own anti inflammatory steroids. And don't believe any doctor who
tell you that nasal steroids don't go systemic or suppress, they do,
there is nothing more efficient for getting a drug into the blood stream
than inhalation or mucosal contact.
Thanks for pointing all of this out to me. Some scary possibilities.
It sounds like I have a lot to think about and research.

Is there a good central location to find solid recommendations for
otolaryngologists? I've been to two recently. My current one was
fairly conservative and didn't suggest surgery until after several
visits over the course of a few years. The 2nd one I saw (after the
surgery done by the first doc, because I was frustrated and wanted
another opinion) immediately suggested going back in for surgery to
enlarge the opening to my maxillary sinuses. Ugh.
Susan
2009-01-14 23:22:11 UTC
x-no-archive: yes
Post by n***@nono.com
Again, thanks. He told me to take two pumps once a day in each nostril
(works out that I do this in the mornings). However, maintenance is
exactly what he's going for with it.
:-/
Post by n***@nono.com
I've been through 3 different rounds of allergy shots over the years. I
can say that I am better than when I first started them, but still have
problems. 4 years ago, I had septoplasty to correct a deviated septum
and at the same time, had an opening added to my maxillary sinuses. I
really wish I had done more research before going in for the surgery.
This is subjective, but I think I am no better off than I was before the
surgery.
Main symptoms - near constant post-nasal drip, sore throats fairly
often, frequent sinus pressure, and really thick mucus (lately, mostly
clear).
That sounds like allergy. I guess I'm puzzled by what "3 rounds" of
allergy shots are? Mine are very potent (12 weeks to desensitization)
and I've never stopped in years, keep getting them, with retesting twice
yearly. I have no signs of nasal inflammation any more, had a very
successful sinus surgery in Sept. My allergist is still increasing the
strength of my allergy vaccinations, which are hugely successful. If
you're having heavy, clear discharge, something in your environment is
causing inflammation.
Post by n***@nono.com
I've been using a Neilmed bottle to rinse my sinuses for the last few
months (finally tossed the waterpik). The last 2-3 times I've gone in
for a sinus infection, I received antibiotics...but only 10 day rounds.
I believe it was Augmentin the last time. Not sure they ever do the
trick. I keep seeing that to be effective, rounds need to be at least
twice as long. Last time, he also prescribed a Medrol does pack. Wow -
that made things feel great...until the rounds were finished.
Yeah, because it's a terribly longacting steroid that suppresses your
adrenal function, which leads to increased inflammation and reduced
ability to fight infections... and which the nasal spray will do in a
more subtle and insidious way, too. I hope you're cleaning that NeilMed
with a bleach solution through it, after each use, too? Using distilled
or boiled and cooled sterile water?
Post by n***@nono.com
* Continue nasal corticosteroid. Had been using Flonase (generic), but
am switching to Rhinocort AQ.
* Use AYR gel at night (something I have used in the past, but not lately).
* Mix 6 Afrin pumps in a bottle of Ocean (or similar) saline mist, and
use 4-5 times a day. This threw up a huge red flag for me. I've read
about rebound problems with Afrin. He said there was good possibility
of that, if used at full strength, but not at the level he suggests
here. I also asked the pharmacist about this and he said similar things
as the doctor. What do you think about it?
I don't know anything about that, but I'd research it further, IIWY.
When I've used it, I've used only one spray and only once per day.
Post by n***@nono.com
* Continue saline rinse.
* Take guaifenesin/PSE in morning and just guaifenesin in evenings
(sudafed keeps me awake) to thin the thick mucus. Does this stuff work
well? It's been prescribed to me several times in the past. The
guaifenesin/PSE combo used to be dirt cheap when it was an Rx, but now
that it's available OTC it's really expensive.
I never found the guaifenesis any more useful than drinking a LOT of
plain water. And it makes me feel like crud. YMMV.
Post by n***@nono.com
I don't think I've ever had so much prescribed in one go around. I'm
not quite sure what to think. Do these seem reasonable?
Not necessarily. Keeping you on long term steroids at any dosage is a
very bad idea, IME. You're already showing signs of adrenal
insufficiency after short courses of steroids. The antibiotic course
was totally insufficent for a chronic infection, Mayo clinic recommends
1-3 months for those.
Post by n***@nono.com
Thanks for pointing all of this out to me. Some scary possibilities. It
sounds like I have a lot to think about and research.
Always use advice such as mine or anyone's as a jumping off point for
your own research. You'll find opinion that nasal steroids don't
suppress or get absorbed, yet you'll also find that children who use
them have growth retardation and Cushing's syndrome. It damages
pituitary function, not just adrenals, including growth hormone, and
promotes diabetes.
Post by n***@nono.com
Is there a good central location to find solid recommendations for
otolaryngologists? I've been to two recently. My current one was
fairly conservative and didn't suggest surgery until after several
visits over the course of a few years. The 2nd one I saw (after the
surgery done by the first doc, because I was frustrated and wanted
another opinion) immediately suggested going back in for surgery to
enlarge the opening to my maxillary sinuses. Ugh.
I saw 9 over more than a decade who failed to diagnose me; good ones are
very, very rare. I found one in metro NY who clearly saw how severe my
sinus disease was and did a successful surgery. If not for my
insistence, though, he, too would've rx'ed steroids that cause severe
HPA damage, such as Prednisone or Dexamethasone.

Susan
n***@nono.com
2009-01-14 23:47:23 UTC
Post by Susan
That sounds like allergy. I guess I'm puzzled by what "3 rounds" of
allergy shots are? Mine are very potent (12 weeks to desensitization)
and I've never stopped in years, keep getting them, with retesting twice
yearly. I have no signs of nasal inflammation any more, had a very
successful sinus surgery in Sept. My allergist is still increasing the
strength of my allergy vaccinations, which are hugely successful. If
you're having heavy, clear discharge, something in your environment is
causing inflammation.
Three rounds - had allergy shots at three different periods in my life,
each time for quite awhile. First two times were well over 20-25 years
ago, and then again about 15 years ago. If you are desensitized, why
keep taking them? Or are you just working on a few allergens at a time?
I guess allergies are not something I considered. There are
certain times when I get classic symptoms like runny nose, itchy/watery
eyes. But much of the time, I just walk around with the symptoms I
describe above. I should probably go back to an allergist - now to just
find a good one. Argh.
Post by Susan
Yeah, because it's a terribly longacting steroid that suppresses your
adrenal function, which leads to increased inflammation and reduced
ability to fight infections... and which the nasal spray will do in a
more subtle and insidious way, too. I hope you're cleaning that NeilMed
with a bleach solution through it, after each use, too? Using distilled
or boiled and cooled sterile water?
No, I haven't been cleaning it with a bleach solution after each use.
I've been using a drop of soap and lots of hot water after each use.
Approximately how much bleach do you use? And...I've been using warm
tap water. Much to learn...
Post by Susan
I saw 9 over more than a decade who failed to diagnose me; good ones are
very, very rare. I found one in metro NY who clearly saw how severe my
sinus disease was and did a successful surgery. If not for my
insistence, though, he, too would've rx'ed steroids that cause severe
HPA damage, such as Prednisone or Dexamethasone.
Thanks for giving me lots to chew on. I'm quite a ways away from NY, or
I'd ask for the doctor you used and just go see them. It is frustrating
finding competent, patient, and communicative doctors. I'm glad to hear
that your surgery went so well. What did you have done?

And speaking of doctors, is there a certain type of allergist to look
for? I've been out of loop for so long, I don't know if they're still
doing things in much the same way as when I was getting shots.

Thanks for taking the time to thoughtfully answer my many questions.
Susan
2009-01-15 00:52:31 UTC
x-no-archive: yes
Post by n***@nono.com
Three rounds - had allergy shots at three different periods in my life,
each time for quite awhile. First two times were well over 20-25 years
ago, and then again about 15 years ago. If you are desensitized, why
keep taking them?
Because desensitized doesn't mean completely non reactive and because
they came back without the continued shot strength.

Or are you just working on a few allergens at a time?

Nope, it's all of them.
Post by n***@nono.com
I guess allergies are not something I considered. There are certain
times when I get classic symptoms like runny nose, itchy/watery eyes.
But much of the time, I just walk around with the symptoms I describe
above. I should probably go back to an allergist - now to just find a
good one. Argh.
I don't know anything about your housekeeping, but I've found that
allergy encasements on my pillows and mattress are essential, no
carpeting critical, mold and dust control throughout my house, a HEPA
filter running in my room and a HEPA filtered vacuum to be key. It's
work, but I feel it without seeing it if my house cleaner misses
something. I can't emphasize this stuff enough, plus scrubbing every
inch of my bathroom top to bottom, ceiling on down, with a bleach
solution weekly.
Post by n***@nono.com
No, I haven't been cleaning it with a bleach solution after each use.
I've been using a drop of soap and lots of hot water after each use.
Approximately how much bleach do you use? And...I've been using warm
tap water. Much to learn...
A few drops to a half full container, shake it up and squeeze through
the tube. You don't want to squirt pseudomonas, mold, mildew or other
bugs up your nose, into your sinuses.
Post by n***@nono.com
Thanks for giving me lots to chew on. I'm quite a ways away from NY, or
I'd ask for the doctor you used and just go see them. It is frustrating
finding competent, patient, and communicative doctors. I'm glad to hear
that your surgery went so well. What did you have done?
I had bilateral ethmoidectomies, bilateral maxillary opening and
emptying, frontal sinus balloon angioplasty, partial turbinectomy (no
trimming, just housekeeping) and septoplasty. My ENT said the mess on
my C-T scans (previously read as "excellent" and "beautiful" took years
to happen, he was horrified that so many doctors had missed it, given
that and my severe symptoms.
Post by n***@nono.com
And speaking of doctors, is there a certain type of allergist to look
for? I've been out of loop for so long, I don't know if they're still
doing things in much the same way as when I was getting shots.
Thanks for taking the time to thoughtfully answer my many questions.
The key question to ask is how long for desensitization? You want the
answer to be 12 weeks. Then you want continued retesting and increasing
vaccination strength. My newest serum after recent testing is so
strong that I now have to divide it into two shots every month or every
two weeks (if symptomatic I can increase frequency) for maintenance
after a few years of increases.

Susan
MS
2009-01-18 20:55:47 UTC
Yes, the steroid nasal sprays are usually used for maintenance, and are
supposed to be used daily, not just while having an acute problem. In fact,
I doubt they would do any good, used once in a while.

Most prescriptions are for once daily usage, however (two sprays in each
nostril, once per day).
x-no-archive: yes
Post by n***@nono.com
Again, thanks. He told me to take two pumps once a day in each nostril
(works out that I do this in the mornings). However, maintenance is
exactly what he's going for with it.
:-/
Post by n***@nono.com
I've been through 3 different rounds of allergy shots over the years. I
can say that I am better than when I first started them, but still have
problems. 4 years ago, I had septoplasty to correct a deviated septum
and at the same time, had an opening added to my maxillary sinuses. I
really wish I had done more research before going in for the surgery.
This is subjective, but I think I am no better off than I was before the
surgery.
Main symptoms - near constant post-nasal drip, sore throats fairly often,
frequent sinus pressure, and really thick mucus (lately, mostly clear).
That sounds like allergy. I guess I'm puzzled by what "3 rounds" of
allergy shots are? Mine are very potent (12 weeks to desensitization) and
I've never stopped in years, keep getting them, with retesting twice
yearly. I have no signs of nasal inflammation any more, had a very
successful sinus surgery in Sept. My allergist is still increasing the
strength of my allergy vaccinations, which are hugely successful. If
you're having heavy, clear discharge, something in your environment is
causing inflammation.
Post by n***@nono.com
I've been using a Neilmed bottle to rinse my sinuses for the last few
months (finally tossed the waterpik). The last 2-3 times I've gone in
for a sinus infection, I received antibiotics...but only 10 day rounds. I
believe it was Augmentin the last time. Not sure they ever do the trick.
I keep seeing that to be effective, rounds need to be at least twice as
long. Last time, he also prescribed a Medrol does pack. Wow - that made
things feel great...until the rounds were finished.
Yeah, because it's a terribly longacting steroid that suppresses your
adrenal function, which leads to increased inflammation and reduced
ability to fight infections... and which the nasal spray will do in a
more subtle and insidious way, too. I hope you're cleaning that NeilMed
with a bleach solution through it, after each use, too? Using distilled
or boiled and cooled sterile water?
Post by n***@nono.com
* Continue nasal corticosteroid. Had been using Flonase (generic), but
am switching to Rhinocort AQ.
* Use AYR gel at night (something I have used in the past, but not lately).
* Mix 6 Afrin pumps in a bottle of Ocean (or similar) saline mist, and
use 4-5 times a day. This threw up a huge red flag for me. I've read
about rebound problems with Afrin. He said there was good possibility of
that, if used at full strength, but not at the level he suggests here. I
also asked the pharmacist about this and he said similar things as the
doctor. What do you think about it?
I don't know anything about that, but I'd research it further, IIWY. When
I've used it, I've used only one spray and only once per day.
Post by n***@nono.com
* Continue saline rinse.
* Take guaifenesin/PSE in morning and just guaifenesin in evenings
(sudafed keeps me awake) to thin the thick mucus. Does this stuff work
well? It's been prescribed to me several times in the past. The
guaifenesin/PSE combo used to be dirt cheap when it was an Rx, but now
that it's available OTC it's really expensive.
I never found the guaifenesis any more useful than drinking a LOT of plain
water. And it makes me feel like crud. YMMV.
Post by n***@nono.com
I don't think I've ever had so much prescribed in one go around. I'm not
quite sure what to think. Do these seem reasonable?
Not necessarily. Keeping you on long term steroids at any dosage is a
very bad idea, IME. You're already showing signs of adrenal insufficiency
after short courses of steroids. The antibiotic course was totally
insufficent for a chronic infection, Mayo clinic recommends 1-3 months for
those.
Post by n***@nono.com
Thanks for pointing all of this out to me. Some scary possibilities. It
sounds like I have a lot to think about and research.
Always use advice such as mine or anyone's as a jumping off point for your
own research. You'll find opinion that nasal steroids don't suppress or
get absorbed, yet you'll also find that children who use them have growth
retardation and Cushing's syndrome. It damages pituitary function, not
just adrenals, including growth hormone, and promotes diabetes.
Post by n***@nono.com
Is there a good central location to find solid recommendations for
otolaryngologists? I've been to two recently. My current one was fairly
conservative and didn't suggest surgery until after several visits over
the course of a few years. The 2nd one I saw (after the surgery done by
the first doc, because I was frustrated and wanted another opinion)
immediately suggested going back in for surgery to enlarge the opening to
my maxillary sinuses. Ugh.
I saw 9 over more than a decade who failed to diagnose me; good ones are
very, very rare. I found one in metro NY who clearly saw how severe my
sinus disease was and did a successful surgery. If not for my insistence,
though, he, too would've rx'ed steroids that cause severe HPA damage, such
as Prednisone or Dexamethasone.
Susan
Info
2009-01-23 16:32:01 UTC
Post by n***@nono.com
x-no-archive: yes
Post by n***@nono.com
Susan,
Thanks for your quick reply. I went to my otolaryngologist today and he
ended up prescribing Rhinocort AQ to me. Wow, it's expensive, compared
to my Flonase (generic). $50 copay vs $25 for the Flonase.
I am not familiar with HPA axis suppression. What is it?
huge snip>
<end snip>
Post by n***@nono.com
I've been using a Neilmed bottle to rinse my sinuses for the last few
months (finally tossed the waterpik). The last 2-3 times I've gone in for
a sinus infection, I received antibiotics...but only 10 day rounds. I
believe it was Augmentin the last time. Not sure they ever do the trick.
I keep seeing that to be effective, rounds need to be at least twice as
long. Last time, he also prescribed a Medrol does pack. Wow - that made
things feel great...until the rounds were finished.
Netipots and bulb syringes are too hard for me to use.
Here's a machine that will pump the solution through your nasal passages.
It has variable speeds and it's very easy to use:
http://www.hydromedonline.com/.
Post by n***@nono.com
* Continue nasal corticosteroid. Had been using Flonase (generic), but am
switching to Rhinocort AQ.
* Use AYR gel at night (something I have used in the past, but not
lately).
* Mix 6 Afrin pumps in a bottle of Ocean (or similar) saline mist, and use
4-5 times a day. This threw up a huge red flag for me. I've read about
rebound problems with Afrin. He said there was good possibility of that,
if used at full strength, but not at the level he suggests here. I also
asked the pharmacist about this and he said similar things as the doctor.
What do you think about it?
* Continue saline rinse.
* Take guaifenesin/PSE in morning and just guaifenesin in evenings
(sudafed keeps me awake) to thin the thick mucus. Does this stuff work
well? It's been prescribed to me several times in the past. The
guaifenesin/PSE combo used to be dirt cheap when it was an Rx, but now
that it's available OTC it's really expensive.
I don't think I've ever had so much prescribed in one go around. I'm not
quite sure what to think. Do these seem reasonable?
Eventually, the steroids cause a backslide by suppressing your immunity
both locally and systemically, and by lowering your body's production of
its own anti inflammatory steroids. And don't believe any doctor who
tell you that nasal steroids don't go systemic or suppress, they do,
there is nothing more efficient for getting a drug into the blood stream
than inhalation or mucosal contact.
Thanks for pointing all of this out to me. Some scary possibilities. It
sounds like I have a lot to think about and research.
Is there a good central location to find solid recommendations for
otolaryngologists? I've been to two recently. My current one was fairly
conservative and didn't suggest surgery until after several visits over
the course of a few years. The 2nd one I saw (after the surgery done by
the first doc, because I was frustrated and wanted another opinion)
immediately suggested going back in for surgery to enlarge the opening to
my maxillary sinuses. Ugh.
Susan
2009-01-23 22:37:22 UTC
x-no-archive: yes
Post by Info
Netipots and bulb syringes are too hard for me to use.
Here's a machine that will pump the solution through your nasal passages.
http://www.hydromedonline.com/.
I threw mine away, it's shoddily made, impossible to keep clean and
sterile, and much more trouble than it's worth.

I've happily switched to a NeilMed bottle, easy to use, clean and to
sterilize, and much more effective, IME.

Save your money.

Susan

Steven L.
2009-01-14 22:04:26 UTC
Post by n***@nono.com
Susan,
Thanks for your quick reply. I went to my otolaryngologist today and he
ended up prescribing Rhinocort AQ to me. Wow, it's expensive, compared
to my Flonase (generic). $50 copay vs $25 for the Flonase.
I am not familiar with HPA axis suppression. What is it? It seems like
following a schedule like you suggest would be easy enough. What are
the possible complications of going off the nasal corticosteroids for a
week - possibly a backslide into the condition you're trying to prevent?
What's worse? Ahhhh...so many questions! :-)
Always follow your own physician's recommendations as to dosing.

By all means, ask him about the possibility of HPA axis suppression.

But do not change your dosing schedule on your own, no matter what you
may hear from others (even me!), without discussing it with your
physician first.
--
Steven L.
Email: ***@earthlinkNOSPAM.net
Remove the NOSPAM before replying to me.
Susan
2009-01-14 23:10:58 UTC
x-no-archive: yes
Post by Steven L.
Always follow your own physician's recommendations as to dosing.
By all means, ask him about the possibility of HPA axis suppression.
But do not change your dosing schedule on your own, no matter what you
may hear from others (even me!), without discussing it with your
physician first.
Steven, that's terrible advice, sorry.

That's what got me Cushing's syndrome, disabled and with a likely
pituitary tumor.

When you've spent as many years (or when doctors do) researching this as
I have, venture an opinion then.

Doctors rarely understand the risks of what they rx, even endos rarely
understand how dastardly even low dose inhaled steroid use is.

Further, the two doctors who have posted here regularly endorsed the
advice I gave the OP when I first posted it. You're more expert than
they are, too?

Susan
Steven L.
2009-01-15 18:24:55 UTC
x-no-archive: yes
Post by Steven L.
Always follow your own physician's recommendations as to dosing.
By all means, ask him about the possibility of HPA axis suppression.
But do not change your dosing schedule on your own, no matter what you
may hear from others (even me!), without discussing it with your
physician first.
Steven, that's terrible advice, sorry.
That's what got me Cushing's syndrome, disabled and with a likely
pituitary tumor.
When you've spent as many years (or when doctors do) researching this as
I have, venture an opinion then.
See above: "By all means, ask him about the possibility of HPA axis
suppression."

But if you can't accept your doctor's recommendations, then find another
doctor. But never do your own thing behind the doctor's back.
Doctors rarely understand the risks of what they rx, even endos rarely
understand how dastardly even low dose inhaled steroid use is.
Look, I had to fire three or four ENTs before I found one who seemed to
know what he was talking about.

But in the meantime, I did NOT pretend that I knew better how to treat
myself than a doctor did. Even the worst of the ENTs (and she was real
stupid too) had more medical training and experience than I did.
--
Steven L.
Email: ***@earthlinkNOSPAM.net
Remove the NOSPAM before replying to me.
Susan
2009-01-15 18:31:11 UTC
x-no-archive: yes
Post by Steven L.
See above: "By all means, ask him about the possibility of HPA axis
suppression."
Meaningless. None of the academic doctors or others who ruined my
health with topical steroids addressed it. All the ones who rx'ed
inhaled/nasal ones believe the drug company garbage about non suppression.
Post by Steven L.
But if you can't accept your doctor's recommendations, then find another
doctor. But never do your own thing behind the doctor's back.
Gosh, that's exactly what I did, after years of peripheral neuropathy
and protein in my urine to diagnose my own long standing diabetes and
change my diet and completely reverse my kidney and nerve damage. It's
also how I cured my PCOS, diagnosed my own adverse reaction to an
insulin sensitizer... I could go on. By all means, do a LOT of
research, and don't waste time letting your doctor to allow your kidneys
to progress to complete failure, for instance!
Post by Steven L.
Post by Susan
Doctors rarely understand the risks of what they rx, even endos rarely
understand how dastardly even low dose inhaled steroid use is.
Look, I had to fire three or four ENTs before I found one who seemed to
know what he was talking about.
But look what happened to your kidneys, Steven, while they diddled
themselves! That would've been my fate, too, had I not gone behind
their backs and done my own thing.
Post by Steven L.
But in the meantime, I did NOT pretend that I knew better how to treat
myself than a doctor did. Even the worst of the ENTs (and she was real
stupid too) had more medical training and experience than I did.
I don't have to pretend. I read a LOT.

Susan
n***@nono.com
2009-01-15 17:13:29 UTC
Post by Steven L.
Post by n***@nono.com
Susan,
Thanks for your quick reply. I went to my otolaryngologist today and
he ended up prescribing Rhinocort AQ to me. Wow, it's expensive,
compared to my Flonase (generic). $50 copay vs $25 for the Flonase.
I am not familiar with HPA axis suppression. What is it? It seems
like following a schedule like you suggest would be easy enough. What
are the possible complications of going off the nasal corticosteroids
for a week - possibly a backslide into the condition you're trying to
prevent? What's worse? Ahhhh...so many questions! :-)
Always follow your own physician's recommendations as to dosing.
By all means, ask him about the possibility of HPA axis suppression.
But do not change your dosing schedule on your own, no matter what you
may hear from others (even me!), without discussing it with your
physician first.
You make a good point, Steven. I think it's key to find a plan with
which a patient and their doctor are both comfortable. I think a good
doctor would listen to their patient's research and concerns.
Susan
2009-01-14 19:29:45 UTC
x-no-archive: yes
Post by n***@nono.com
Which nasal corticosteroids do not have Benzalkonium chloride in them?
AFAIK, all but Rhinocort.

BK is a problem, but not the only one. You want to avoid HPA axis
suppression by nasal steroids, too. You can get the benefits while
minimzing the risks by using them only for 3 weeks on, then one week
off, and using them only in the a.m. (suppresses for 12 hours) and not
at night (suppresses for 24 hours).

HTH.

Susan
MS
2009-01-18 20:43:41 UTC
Nope, Rhinocort is not the only one without benzalkonium. The other one is
the new one, Omnaris. (Being new and brand name, it would also cost you more
than generic Flonase. Not a problem for me, due to prescription insurance.)
It (ciclesonide) has also tested to have less systemic absorption than the
other brands.

I should also mention that the vast majority of doctors--including
otolaryngolists, allergists, etc., do not agree with Susan that use of nasal
steroid sprays suppresses immunity, etc. (Again though, less chance of that
with Omnaris than others.) I'm not taking a position on that myself, just
saying that her opinion about that is contrary to that held by most doctors.

Actually, similarly with benzalkonium chloride, despite what one may read on
Internet newsgroups--most doctors do not think it is a problem, except for
people who are particularly sensitive to it. You might be fine using the
generic Flonase. (If I didn't have the RX insurance, I most likely would use
that. I use other sprays that have bk, including generic atrovent nasal
spray, and Patanase.)
x-no-archive: yes
Post by n***@nono.com
Which nasal corticosteroids do not have Benzalkonium chloride in them?
AFAIK, all but Rhinocort.
BK is a problem, but not the only one. You want to avoid HPA axis
suppression by nasal steroids, too. You can get the benefits while
minimzing the risks by using them only for 3 weeks on, then one week off,
and using them only in the a.m. (suppresses for 12 hours) and not at night
(suppresses for 24 hours).
HTH.
Susan
Susan
2009-01-18 22:22:05 UTC
x-no-archive: yes
Post by MS
Nope, Rhinocort is not the only one without benzalkonium. The other one is
the new one, Omnaris. (Being new and brand name, it would also cost you more
than generic Flonase. Not a problem for me, due to prescription insurance.)
It (ciclesonide) has also tested to have less systemic absorption than the
other brands.
I should also mention that the vast majority of doctors--including
otolaryngolists, allergists, etc., do not agree with Susan that use of nasal
steroid sprays suppresses immunity, etc. (Again though, less chance of that
with Omnaris than others.) I'm not taking a position on that myself, just
saying that her opinion about that is contrary to that held by most doctors.
Actually, similarly with benzalkonium chloride, despite what one may read on
Internet newsgroups--most doctors do not think it is a problem, except for
people who are particularly sensitive to it. You might be fine using the
generic Flonase. (If I didn't have the RX insurance, I most likely would use
that. I use other sprays that have bk, including generic atrovent nasal
spray, and Patanase.)
Most doctors don't know dick about the drugs they prescribe, from side
effects to interactions.

They get all their education on the subject from drug sellers.

Susan
Steven L.
2009-01-23 22:08:28 UTC
x-no-archive: yes
Post by MS
Nope, Rhinocort is not the only one without benzalkonium. The other
one is the new one, Omnaris. (Being new and brand name, it would also
cost you more than generic Flonase. Not a problem for me, due to
prescription insurance.) It (ciclesonide) has also tested to have less
systemic absorption than the other brands.
I should also mention that the vast majority of doctors--including
otolaryngolists, allergists, etc., do not agree with Susan that use of
nasal steroid sprays suppresses immunity, etc. (Again though, less
chance of that with Omnaris than others.) I'm not taking a position on
that myself, just saying that her opinion about that is contrary to
that held by most doctors.
Actually, similarly with benzalkonium chloride, despite what one may
read on Internet newsgroups--most doctors do not think it is a
problem, except for people who are particularly sensitive to it. You
might be fine using the generic Flonase. (If I didn't have the RX
insurance, I most likely would use that. I use other sprays that have
bk, including generic atrovent nasal spray, and Patanase.)
Most doctors don't know dick about the drugs they prescribe, from side
effects to interactions.
They get all their education on the subject from drug sellers.
In my experience, doctors know more about the possible side effects than
they reveal to their patients--unless the patients ask them first.

The doctors are understandably reluctant to volunteer that information,
because it might scare their patients away from using the medication!
Like if a doctor tells the patient, "Now this medication has been shown
to produce malignant tumors in mice, but don't worry about that...." :-)

As for the manufacturers, they are NOT reluctant to mention things like
HPA axis suppression. They are required to test drugs for safety. For
example, the package insert for Aerobid (flunisolide) states:

"The long-term local and systemic effects of AEROBID (flunisolide) in
human subjects are still not fully known. In particular, the effects
resulting from chronic use of AEROBID on developmental or immunologic
processes in the mouth, pharynx, trachea, and lung are unknown."

It also lists "upper respiratory infection" as a possible side effect,
hinting at immune system suppression. And yep, that was what I got when
I took Aerobid once.

So there's no dishonesty here. There is a tradeoff between the
desirable effect and the potentially bad side effects with any
medication, even Tylenol. Both the doctor *and* the patient need to
keep this in mind with any medication.
--
Steven L.
Email: ***@earthlinkNOSPAM.net
Remove the NOSPAM before replying to me.