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Medical Forum / Diseases and Disorders / Sinusitis / January 2007Steroid warning network
I found this in my search for information about my topical steroid induced Cushing's syndrome: http://tinyurl.com/y67nwf Lest you think they're exaggerating, just do a Medline search for iatrogenic Cushing's syndrome. Adrenal suppression kicks in after two weeks, according to my research and the opinion of the endocrinologist I recently consulted. No one is addressing this issue; all the research and clinical support is for endogenous or tumor driven CS, yet the majority of cases are steroid induced. Susan > x-no-archive: yes > [quoted text clipped - 7 lines] > weeks, according to my research and the opinion of the endocrinologist I > recently consulted. I thought the possibility of systemic absorption (including Cushing's Syndrome) from topical corticosteroids was common knowledge. Even good old Cortaid Cream (applied to the skin) can cause this: http://www.rxlist.com/cgi/generic3/pandel_wcp.htm http://www.rxlist.com/cgi/generic3/hc1_wcp.htm Obviously it depends on dosing--in the case of topical creams or ointments, how much skin area is dosed and how often and for how long. There are accurate tests to determine possible HPA axis suppression in a patient, and it's easily reversible if the medication is discontinued. Topical steroids applied intranasally can be absorbed thru the mucous membranes of the nose. I've already mentioned how the Cleveland Clinic has stopped prescribing gentamicin irrigation because they have discovered that enough of it is absorbed into the body to cause problems. Even worse, of course, are inhaled steroids that asthmatics depend on.  SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > I thought the possibility of systemic absorption (including Cushing's > Syndrome) from topical corticosteroids was common knowledge. Steven, it's extremely uncommon for doctor's to be aware of this or to diagnose it, even when very plain, obvious visual pathognomonic clues are present, such as the ones I have documented by photos and medical records for decades. Not one of the doctors (most of whom were prestigious university chairs or faculty) who rx'ed topical or inhaled/nasal teroids for me for decades, often in tandem, ever suggested using them sparingly or taking a break from them, even as I showed flagrant signs and lost my immune competence. Susan > x-no-archive: yes > [quoted text clipped - 10 lines] > a break from them, even as I showed flagrant signs and lost my immune > competence. about 6 years ago, I was experiencing major personality changes (violent mood swings), something I had never experienced before in my entire life. Only after I consulted a psychiatrist did *she* point out that it could have been exacerbated by a systemic side effect of the heavy dose of inhaled steroids I was taking for my adult-onset asthma. She turned out to be right, and this was something no asthma specialist had mentioned to me. Cutting back the dose and switching to a different medication with different particulate size alleviated the problem, and my personality stabilized without any psychotherapeutic medications required. I have plenty of other anecdotal evidence like this to support my contention that when it comes to side effects, your fate is in your own hands. ALWAYS READ THE PACKAGE INSERT AND BE ALERT! SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > I have plenty of other anecdotal evidence like this to support my > contention that when it comes to side effects, your fate is in your own > hands. ALWAYS READ THE PACKAGE INSERT AND BE ALERT! Lemme' take that one step further: If you're having unexplained medical problems, thoroughly research any medication that you are taking--INCLUDING its component parts--for any possible connection to the problems that you're having. It's not always a listed side effect on the prescribing insert, even though it may be a known issue. Neil Who has corneal hyperesthesia and SEVERE dry eye syndrome caused by long-term use of prescribed cycloplegic eye drops preserved with benzalkonium chloride (yes, the same preservative used in so many nose sprays. Causes lots of harm in THAT application, too).... > about 6 years ago, I was experiencing major personality changes (violent > mood swings), something I had never experienced before in my entire [quoted text clipped - 10 lines] > contention that when it comes to side effects, your fate is in your own > hands. ALWAYS READ THE PACKAGE INSERT AND BE ALERT! Steven, I was a teenager when I first showed obvious signs of Cushings, at an age when it never occurred to me (or my parents) to question my doctors. Three endcrinologists and all the dermatologists who failed to diagnose me also failed to read the inserts, apparently. Susan > x-no-archive: yes > [quoted text clipped - 17 lines] > doctors. Three endcrinologists and all the dermatologists who failed to > diagnose me also failed to read the inserts, apparently. In theory, when you tell your physician what medications you are taking (a routine question they always ask), they should consult the PDR to see if any of those medications can be causing your symptoms (Cushing's or whatever). In my experience, the best doctors at doing this are allergists--they are all too familiar with allergic drug reactions so they know to watch out for bizarre effects of drugs. My allergist has a Blackberry and whenever he prescribes a med for me, he checks it online against the other meds I'm taking to check for drug interactions and odd side effects. He also checks online whatever herbals and nutritional supplements I'm taking too. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > In theory, when you tell your physician what medications you are taking > (a routine question they always ask), they should consult the PDR to see > if any of those medications can be causing your symptoms (Cushing's or > whatever). They never had to ask, I always stated it verbally and in writing. > In my experience, the best doctors at doing this are allergists--they > are all too familiar with allergic drug reactions so they know to watch > out for bizarre effects of drugs. Neither of my allergists have ever considered it. The one I left after she'd made me so much sicker gave me asthma by resensitizing me, then put me on Advair. :-/ I no longer have ashtma since returning to my former allergist. My allergist has a Blackberry and > whenever he prescribes a med for me, he checks it online against the > other meds I'm taking to check for drug interactions and odd side > effects. He also checks online whatever herbals and nutritional > supplements I'm taking too. Steven, you're not understanding the situation. Even the doctor who dx'ed my steroid induced adrenal suppression and hypercortisolemia did not put it in my dx code. Almost every doctor is writing rx's for steroids in one form or another daily, without telling patients to stop them after two weeks or to pulse them every other day or two. They'd be self indicting and become pariahs if they diagnosed all the steroid induced Cushing's and AS out there. Allergists and ENTs are among the biggest offenders, with the way they treat asthma. Susan > x-no-archive: yes > [quoted text clipped - 27 lines] > self indicting and become pariahs if they diagnosed all the steroid > induced Cushing's and AS out there. I think you're the one who's not understanding the situation. You're focused on AS because it happened to you. But as I said, it's a general problem: There are a thousand prescription meds, each with its own unique side effect profile, and no physician is going to be able to juggle all that stuff in his head. And there are so many possible though rare side-effects listed for each drug, some of them very vague (like "nervousness" or "dryness"), that in general it's real tough for a physician to plan everything out a priori--like whether taking medication ABC together with medication XYZ is more likely to cause "nervousness" (whatever that means) than taking medication GHI together with medication ZYW. In general, side effects are just something you have to cope with after they've occurred. And drug interactions really do require a computerized database these days to analyze properly. (Just keeping track of cytochrome P450 interactions is best done with a spreadsheet.) Most physicians aren't equipped with those, but fortunately most pharmacists are and they are now our first line of defense against drug interactions. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > I think you're the one who's not understanding the situation. > [quoted text clipped - 8 lines] > "nervousness" (whatever that means) than taking medication GHI together > with medication ZYW. > In general, side effects are just something you have to cope with after > they've occurred. And drug interactions really do require a [quoted text clipped - 3 lines] > pharmacists are and they are now our first line of defense against drug > interactions. Cushing's syndrome is not a mere side effect, it's life threatening and debilitating. The first role of doctoring is "do no harm." Any doctor who routinely rx's any steroid of any type without familiarizing him/herself with the signs and sx of Cushing's syndrome is life threateningly ignorant. You have no idea, and I'm not going to do a litany here, of the way this ignorance and failing has shaped my life, my ill health and even my family's. At this very moment, I am riddled with opportunistic infections and avascular necrosis of my right heel. Since the mid 90s, I've used only a very small amount of a topical steroid solution daily. I stopped it months ago. I have just been diagosed with iatrogenic Cushing's syndrome. The first doctor who failed to diagnose it as a result of his treatment of me despite classic presentation when I was 16 was a deified, world renowned dermatologist and chair of a very prestigious academic dept for 20 years. All the docs I had for decades after trained in that dept. None of them ever limited how much I used of increasingly potent steroids, or instructed about taking vacations from them, or commented on the fatty buffalo hump I had even when slim. I have been seeing a vast number of doctors since the age of 14, not one, not even the endocrinologist I saw when I had an adrenal crisis even diagnosed it. Susan Steven, Another quick way to run med interaction checks is to dowload the basic version of epocrates, whick is free. My allergist's wife became adrenally suppressed on flovent 110 at standard doses. The drug reps swore it wasn't systemically absorbed. He avoids it now, and uses pulmicort--but it can cause problems as well. He's very sensitive to the issue after it effected his wife. Judy > > x-no-archive: yes > > [quoted text clipped - 53 lines] > Email: sdlitvin@earthlinkNOSPAM.net > Remove the NOSPAM before replying to me. > Steven, > Another quick way to run med interaction checks is to dowload the [quoted text clipped - 3 lines] > avoids it now, and uses pulmicort--but it can cause problems as well. > He's very sensitive to the issue after it effected his wife. Judy, I've only just realized how undiagnosed, iatrogenic Cushing's syndrome has been the defining force in my life, and in my family's to a degree I won't discuss here. Right now, months after discontinuing the small amount of topical solution I was using, I alternate between hyper and hypo cortisolism. I have four infections going on at the moment, including my sinusitis. I'm on two Augmentin XR tablets, twice per day. One of the infections appears to be in the bone of my thumb. My right heel bone is necrotic. I have a friend who I am certain, due to many years of use of nebulizers and inhalers, has CS, too. She has necrotic bone in her foot, too. None of the many doctors who she saw for this and her unintentional weight loss has ever considered suppression due to steroids. There is virtually no useful literature on this, just on tumor caused CS. Not hard to figure out why. It takes only two weeks for 50% folks using a small amount of topical scalp solution to develop signs of adrenal suppression. How many doctors *aren't* rx'ing some form of steroids that drug reps claim aren't systemically absorbed daily? Susan Susan, We believe what is written in the PDR or similar references. I personally have never seen drug reps, but unfortunately, their influence is pervasive in the lectures that are given by experts (they almost all receive drug company funding, and have bias--it's an evolving scandal, it effects most of the NIH and the FDA--they all have conflicts of interest.) Classically, we're told to inform patients of bone necrosis with oral steroids, not with topical or inhaled. Inhaled steroids are primarily a concern for growth velocity in kids, cataracts and possible osteoporosis in adults. Adrenal suppression is not considered to be a problem at typical doses, and the steroids are classified by bioavailabity with nasonex as the lowest bioaviabilty and fluticasone a close second. Yet, from your experience and my allergist's, they aren't inert and they are systemically absorbed. Four infections, including bone infections, sounds horrible. In a typical primary care office, you see many patients in a day. It's often hard for physicians to be up to date on all topics. So, you rely on CME, and many lectures and articles are written with bias. The trend toward evidence based medicine doesn't account for the fact that much of the evidence is flawed through bias. (Drug companies supppress studies that don't show benefit, expert panels are comprised of physicians with multiple ties to drug companies--in the last year it's become a big issue, with articles in JAMA and NEJM, but even some of those articles were suppressed and published by Lancet. Tough not to be paranoid and frustrated.) You are your best advocate, as you have proved time and again. Judy > x-no-archive: yes > [quoted text clipped - 31 lines] > > Susan > Susan, > We believe what is written in the PDR or similar references. I [quoted text clipped - 24 lines] > paranoid and frustrated.) > You are your best advocate, as you have proved time and again. Judy, I failed myself, too. With devastating consequences, some of which I won't discuss here. I have to say, thinking back to all my "vague, non specific" complaints over decades, including weeks spent in NYU medical center in my 20s during my year of FUO, with my labs showing sky high calcemia, my skin desquamating and my joints crippled, drenching night sweats, my knee blown up and my severe fatigue and unintentional weight loss, etc., it would have been helpful if those treating me with betamethasone dipropionate had considered something other than "someone had a bad day in the lab" wrt to my hypercalcemia. It was practically skywritten for them. The doctor I just quoted is chief of his dept. at another presigious NYC hospital. I had Cushings and undiagnosed tick borne diseases. My symptoms and especially my signs were classic for both. I got more steroids and more immunosuppressive treatment for my troubles. Susan Susan, It's too bad that things become clearer in retropect: have you been following the controversy between the Infectious Disease Assoc vs. the Lyme Association regarding clinical guidelines and longer term treatment with IV antibiotics. I have to admit, in my state, long term IV treatment is mandated--from a legislator whose sister had chronic lyme--and when I worked as an insurance person, we got "expert" ID opinions that said it wasn't warranted, but the legislator showed up at the office and threatened civil action, and the child got her IV antibiotics. One ID expert, who lived on the Cape, admitted that he had some doubts about the studies that showed long term treatment with antibiotics were of no value--because of how many patients told him they felt better. You didn't fail yourself, medical knowledge is limited. Judy > x-no-archive: yes > [quoted text clipped - 46 lines] > > Susan > Susan, > It's too bad that things become clearer in retropect: have you been > following the controversy between the Infectious Disease Assoc vs. the > Lyme Association regarding clinical guidelines and longer term > treatment with IV antibiotics. Yes, the IDSA completely ignored the body of science, and made completely scientifically and clinically unsupportable assertions in their recommendations. ILADS sometimes does the same. It's a controversy expressly because there is so much unknown. I've been in the room where IDSA members plainly said that we don't know what Lyme disease even is, since we've only recently learned what coinfections exist, that it's chronic, that there are no clinically meaningful dx tests. Some of the folks I'm referring to have spoken out of the other side of their mouths in supporting the IDSA guidelines. > I have to admit, in my state, long term IV treatment is > mandated--from a legislator whose sister had chronic lyme--and when I [quoted text clipped - 5 lines] > antibiotics were of no value--because of how many patients told him > they felt better. There're arguments to be made on both sides. As a Lyme advocate, I never argued for long term or IV treatment, I argued for the rights of doctors and patients to make those decisions together, based upon their experience, since so little is known. I am very supportive of this group, completely removed from the politics of TBDs, focused on pathogenesis: www.nrftd.org. Friends of mine are involved. No politics, just the science, thankyouverymuch. There are no studies demonstrating superiority of IV over orals, particularly high dose doxy, with it's excellent CNS penetration. My child was held together with years of oral abx til we experimented with Zithromax/Mepron and achieved a cure after 3 1/5 years of hell. > You didn't fail yourself, medical knowledge is limited. Judy, I ran med/psych case management programs for years. I was more than assiduous in leaving no stone unturned, particularly when things started going south. I let the topical steroid become wallpaper in my life, and forgot to consider it in trying to assess my own health problems. I got focused on the TBDs and the vast improvements with doxy. I ignored the buffalo hump I had for years, along with my docs, that went away when I stopped using the cream. I had both elevated and severely reduced cortisol results over the years. I should have looked it up. I should have brought it to my internist's attention when my new derm got so freaked out that I'd been on such high potency stuff daily for decades. She was the only one who'd mentioned it, the only one not trained at NYU. It's exhausting to have to be so vigilant at the very moments one is desperately ill, weak and less than capable. I want there to be a black box warning on all steroids, OTC and rx, with a requirement for monthly or quarterly 24 hour UFC testing for all those on any form of steroid. Susan Susan Still, I find that you can't treat family members, because you can't be objective, and it's nearly impossible to self-diagnose--especially with initial issues. It's easier to spot a recurrent problem. I've become frustrated and disillusioned when my family or me have received substandard care--and most of the care we have received has been substandard. I've worked with a very smart NP who always says "The healthcare system never fails to dissapoint me." I agree. People get caught up in credentials: I came from the midwest and am affiliated with an ivy league school now--I find that the ivy league believes it's own press, while the midwestern public university was down to earth. My allergist isn't even board certified--he's a family doctor who pursued allergy training later in his career and he's amazing. He's slowly cutting back, and it terrifies me, because he's the gold standard--he thinks, he approaches each case with fresh eyes. When my family has been ill, I've run off to prominent teriary care centers, with mixed results. The best people have been the ones with the least ego. You can't treat yourself, or diagnose yourself--but unfortunately you have to, and I agree it's so hard when you're feeling lousy and not feeling like the system is working with you. It's not your fault that you didn't recognize the early signs, thank goodness the dermatologist raised the issue. Thanks for the web site. Judu > x-no-archive: yes > [quoted text clipped - 62 lines] > > Susan > Still, I find that you can't treat family members, because you can't be > objective, and it's nearly impossible to self-diagnose--especially with > initial issues. It's easier to spot a recurrent problem. All the problems have been longstanding and concurrent, but weren't recognized. When I showed up with striae at age 16, you'd think it would've prompted some caution, monitoring and intervention by the world famous dept. chair? > I've become frustrated and disillusioned when my family or me have > received substandard care--and most of the care we have received has > been substandard. I've worked with a very smart NP who always says "The > healthcare system never fails to dissapoint me." I agree. Me three. > People get caught up in credentials: I came from the midwest and am > affiliated with an ivy league school now--I find that the ivy league [quoted text clipped - 3 lines] > amazing. He's slowly cutting back, and it terrifies me, because he's > the gold standard--he thinks, he approaches each case with fresh eyes. I've often found that community based doctors are the only ones open to patients' observations and are less dogmatic. Lyme has taught me that academic docs lie through their teeth daily to save their careers, knowing how many patients are being harmed. > When my family has been ill, I've run off to prominent teriary care > centers, with mixed results. The best people have been the ones with > the least ego. They should have warning stickers on their forheads. > You can't treat yourself, or diagnose yourself--but unfortunately you > have to, and I agree it's so hard when you're feeling lousy and not > feeling like the system is working with you. I'm all I've got. My present PCP is the best doc I've ever had, but he gets very uncomfortable and dismissive because he's intimidated by all I know, so he's told my other doctors; "Susan knows more about her conditions than I do, and it's very intimidating to me." > It's not your fault that you didn't recognize the early signs, thank > goodness the dermatologist raised the issue. Judy, those signs were over 35 years ago and they were blatant, I just didn't know what they meant. The derm raised it to me a few years ago, I just didn't take it seriously because I wasn't connecting my other problems and signs to it. Nor did any other physician, not when I had elevated cortisol in 91, suppressed cortisol later on, nor did an endo when an adrenal crisis befell me when abruptly dc'ed from the betamethasone in the mid 90s. She tested my reserve and told me I was fine, despite a cortisol level of 1.5, desquamation, clamminess, weakness, fatigue, loss of appetite, etc. I guess none of it is malpractice because the community standard is so f.cking low. Susan On 1/13/07 7:27 AM, in article 50sc38F1ghnlcU1@mid.individual.net, "Susan" <nevermind@nomail.com> wrote: > x-no-archive: yes > [quoted text clipped - 46 lines] > > Susan Frankly I am somewhat puzzled after reading these letters. In our 5 person ENT group I don't think we have anyone on constant nasal steroid use. There are usually so many other - possible cheaper - courses to follow including dust proofing, lifestyle changes, irrigation, turbinate injection or surgery, allergy desensitization, antihistamines, short courses of systemic corticosteroids, etc etc. If you have required cortisone spray for more than two years, I suggest you check out Amazon - there are some excellent Sinus books by Harvard Medical, Josephson, Grossan and others which deal with total life style changes for nasal/ sinus symptoms. > Frankly I am somewhat puzzled after reading these letters. In our 5 person > ENT group I don't think we have anyone on constant nasal steroid use. There [quoted text clipped - 5 lines] > books by Harvard Medical, Josephson, Grossan and others which deal with > total life style changes for nasal/ sinus symptoms. Yes, you are very confused, Murray. I have not been referring to inhaled steroids or nasal sprays in my own history. Two weeks is how long it takes for signs of HPA axis suppression to show up with even small doses on non superpotent topicals, though. Do you or anyone in your practice rx inhaled or sprayed steroids for more than 2-3 weeks at a time without a one week break? Susan On 1/13/07 11:53 AM, in article 50srmcF1fvan4U1@mid.individual.net, "Susan" <nevermind@nomail.com> wrote: > x-no-archive: yes > [quoted text clipped - 17 lines] > > Susan I was not referring to you in particular but rather the long term steroid use studies. I think the one problem is that people have a single treatment mindset - Should I have Surgery? Should I take Cipro? Should I take Nasonex? The correct question is , "What should I do that will make me well, cheaply if possible? Again, this is not directed on any one in particular, but I hear this daily and I have to convert the patient. She can't understand why, when she came in to ask about refilling her Rx we took her blood pressure and asked about her thyroid! And why I insisted on knowing what drugs she was taking. > I was not referring to you in particular but rather the long term steroid > use studies. [quoted text clipped - 6 lines] > in to ask about refilling her Rx we took her blood pressure and asked about > her thyroid! And why I insisted on knowing what drugs she was taking. I've never known a single patient to want simply to show up and get refills. Sadly, it's what patients have come to expect of harried doctors trying to shore up billable appointments now that insurers decide how much each appointment costs. But this thread is about steroids, Murray, despite your diversion here. If you or any of your associates are rxing any kind of steroid for more than two weeks without taking a break or monitoring for symptoms and signs of adrenal suppression, then you are harming the patient and breaking rule number one. Not one physician I saw ever asked how much or how often I used steroids topicallly, including those who rx'ed it and the endocrinologists I saw in later years, once for adrenal crisis that she blew off. Susan On 1/13/07 2:59 PM, in article 50t6hhF1hqbtvU1@mid.individual.net, "Susan" <nevermind@nomail.com> wrote: > x-no-archive: yes > [quoted text clipped - 25 lines] > > Susan Better than that, our group endeavors to reduce the steroid use. For example rinsing the nose before a nasal steroid application increases its effectiveness and makes a second dose less necessary. Or substituting other products - esp saline or antihistamine sprays. Another useful technique is to mark every steroid Rx No Not Refill. That cuts down chance of Rx errors. > Better than that, our group endeavors to reduce the steroid use. For example > rinsing the nose before a nasal steroid application increases its > effectiveness and makes a second dose less necessary. Or substituting other > products - esp saline or antihistamine sprays. > Another useful technique is to mark every steroid Rx No Not Refill. That > cuts down chance of Rx errors. By doctors. I've never had one give me less than a year's refills, with no instructions to use sparingly or to take breaks, except my current derm. Susan hydromed@adelphia.net (Murray Grossan) wrote: >Better than that, our group endeavors to > reduce the steroid use. For example rinsing [quoted text clipped - 5 lines] > every steroid Rx No Not Refill. That cuts > down chance of Rx errors. The first thing that people should do is stop spreading fact-less rumours. .... I often wonder how many people have foregone specific medication for a serious health condition because some one has extrapolated an insignificant side-effect into a guaranteed result. ...A good story for Penn and Teller's "Bullshit" series. I've been on Flonase "STEADY" for the past 6 years. The safety of the product is backed by many scientific studies, not by some bean sprout and broccoli individual. ...I know for a fact that along with irrigation, it has worked wonders for keeping my sinusitis under control. The (Canadian) tests say that if it is used as directed there is an insignificant amount absorbed into the body -- and no indication that its long-term use could lead to adrenal shut down. If this is the case, I'll prefer to take my chances. Jesus.. Every medication has its drawbacks. ...Even your irrigation system flushes the good guys out of the nasal cavity. ...Jon > The first thing that people should do is stop spreading fact-less > rumours. .... I often wonder how many people have foregone specific [quoted text clipped - 13 lines] > medication has its drawbacks. ...Even your irrigation system flushes the > good guys out of the nasal cavity. ...Jon This medication has life threatening drawbacks that are avoidable without giving up its benefits. It has been proven to suppress the HPA axis. Choosing not to learn how to use it to minimize risk is a bad choice, but it's your body, your science experiment. Susan > Frankly I am somewhat puzzled after reading these letters. In our 5 > person ENT group I don't think we have anyone on constant nasal [quoted text clipped - 6 lines] > Medical, Josephson, Grossan and others which deal with total life > style changes for nasal/ sinus symptoms. I just went to an ENT at Lahey. When he examined me he found small polyps growing. I already had one nasal polyp removed 3 years ago. My reason for going to him was this stubborn inflamation and pressure in my sinuses, I think they are infected, he is not sure. But anyway, he prescribed one years worth of Nasonex and also said that I would have to be on nasal steroids for the rest of my life to keep the polyps under control, either that or perodically I would have to have surgery. SignatureTerry =========================================================== Terry Raymond Crafted Smalltalk 80 Lazywood Ln. Tiverton, RI 02878 (401) 624-4517 traymond at craftedsmalltalk nospam dot com <http://www.craftedsmalltalk.com> =========================================================== But anyway, he prescribed > one years worth of Nasonex and also said that I would have > to be on nasal steroids for the rest of my life to keep > the polyps under control, either that or perodically I > would have to have surgery. Don't do it. Not without both a week off each month and regular 24 hour urinary free cortisol testing. Do try to find someone to rapidly desensitize you to any allergies, it makes a huge difference. Susan Terry, Did you like the MD at Lahey? I had posted our experiences there: with Dr. Catalano and Dr. Hybels. It's common practice--unlike Murray Grossan's post--for allergists and ENT's to provide indefinite nasal steroids. Especially if polyps are an issue. Nasonex is the least systemically bioavailable steroid. I have to disagree with Dr. Grossan that most patients can do some simple lifestyle changes and avoid nasal steroids. As Dr. Ferguson wrote from U Pitt, about 20% of chronic sinusitis patients have a recessive gene for cystic fibrosis, it is unlikely that warm tea, allergy shots, one surgery, will do anything for their genetically caused thick mucous and ciliary dysfunction. I think we need to be careful with inhaled steroids, but I do think in a case where someone has nasal polyps, rather than recurrent surgeries, I'd follow the ENT s advice, and clue my primary care MD into watching for adrenal suppression. Judy > > Frankly I am somewhat puzzled after reading these letters. In our 5 > > person ENT group I don't think we have anyone on constant nasal [quoted text clipped - 27 lines] > <http://www.craftedsmalltalk.com> > =========================================================== > I think we need to be careful with inhaled steroids, but I do think in > a case where someone has nasal polyps, rather than recurrent surgeries, > I'd follow the ENT > s advice, and clue my primary care MD into watching for adrenal > suppression. The ENT's advice sucked because it didn't include discussion about how to use nasal steroids long term while minimizing complications. You don't want to use them until you've got clearly documentable adrenal suppression, IMNSVHO, you want to *prevent* it. The word that we see most often in reference to long courses of topical and other steroids is tachyphylaxis; this means that the steroid stops working and the original indication/condition gets worse; this is the norm, not an exception. This triggers even worse symptoms and decision making; more steroids! Steroids shut down your own body's natural steroid output, which is why they worsen inflammatory conditions when used long term, do not improve or even control them. In addition, they inhibit and compromise your infection fighting ability, so you're more likely to get more acute sinus problems long term. If they are deemed truly necessary long term, there are methods of using them that help to delay or minimize tachyphylaxis, adrenal and immune suppression. Still, I'd advise using them only while you aggressively pursue root causes and treatment, such as allergic desensitization. Some tips for avoiding adverse outcomes: First, don't dose at night; steroid dosing at night suppresses HPA axis for 24 hours rather than a shorter time when dosing coincides with normal cirdadian rhythm of adrenal hormones. Second, alternate days of use, AND limit use to early in the day, preferably a.m. only. Third, take a week off every two or even three, so your adrenals don't atrophy or shut down. If you do all the above, you *may* be able to use a nasal steroid long term with minimized risk of adverse outcome and maximum benefits from the doses you do use. If you don't, you may end up in the bad decision making cycle by physicians; worsening sinuses = stronger steroids, instead of recognition that the steroids have become part of the problem by worsening your own defensese. Susan On 1/14/07 10:37 AM, in article 50vbikF1huoeiU1@mid.individual.net, "Susan" <nevermind@nomail.com> wrote: > First, don't dose at night; steroid dosing at night suppresses HPA axis > for 24 hours rather than a shorter time when dosing coincides with [quoted text clipped - 4 lines] > nasal steroid long term with minimized risk of adverse outcome and > maximum benefits from the doses you do use. All excellent advice. I would add saline irrigation before using the nasal steroid spray - then more gets used and you can avoid a second dose for the day. 1st, I have been to an allergist and had the standard tests which were all negative. If I am allergic to something, I don't know what it is. 2nd, my prescription is 100mcg per nostril once a day. I dose myself in the morning. My process is to wait until most of the congestion clears out then irrigate. Then I wait for my passages to clear up and then I dose the steriod. My doctor wants me to do a sinus rinse using a bulb, but I think I will use a neti pot instead. He specified 4oz per side twice a day. The funny thing is that the recipe for the solution is a buffered isotonic solution, but the buffering is rather high, 1 teaspoon of baking soda for 16oz of water. The instructions are for post-operative nasal rinse. It seems that each doctor does something different. > x-no-archive: yes > [quoted text clipped - 47 lines] > > Susan SignatureTerry =========================================================== Terry Raymond Smalltalk Professional Debug Package Crafted Smalltalk 80 Lazywood Ln. Tiverton, RI 02878 (401) 624-4517 traymond at craftedsmalltalk nospam dot com <http://www.craftedsmalltalk.com> =========================================================== > 1st, I have been to an allergist and had the standard tests > which were all negative. If I am allergic to something, I > don't know what it is. Some folks are anergic, don't react to the skin test, some folks don't react to the RAST test, but that doesn't mean you don't have allergies. It could be worthwhile investigating other detection methods. > 2nd, my prescription is 100mcg per nostril once a day. I > dose myself in the morning. My process is to wait until [quoted text clipped - 7 lines] > is rather high, 1 teaspoon of baking soda for 16oz of water. > The instructions are for post-operative nasal rinse. That's a good dosing schedule, except if you're taking it without pause more than a few weeks. Susan |
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