Medical Forum / Diseases and Disorders / Asthma / May 2006
Nothing seems to work for my severe Asthma
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miles - 28 Apr 2006 03:30 GMT I have very severe Asthma. It effects me 24/7 and has been that way for about 20 years now. I've been to several Dr.'s and all pretty much take the same route. Load me up with pills, inhalers etc. Nothing has ever made much of a difference.
I have been on Advair 500mg but have stopped after the warnings came out. I believe Advair helped a slight amount. I started Spirava which maybe helping but have to use a bit longer to really tell.
I've tried Asmacort, Singular, Flovent, Serevent, and a long list of other drugs with virtually zero improvement.
For most of the 20 years my asthma has been uncontrolled. Albuterol helps but often only for a short period (30 minutes or less). Even strong doses of Medrol or Prednisone have little effect.
I have been on Xolair injections for 2 years now. It seems to have reduced the number of very severe days and ER visits but has not improved my day to day health.
Anyone else here with very severe asthma where most typical asthma drugs do very little? If so, what have you done to control your asthma? I've heard people mention Asmanex. I am not familiar with that. Is there much success with it where other meds have failed?
Jason - 28 Apr 2006 21:56 GMT > I have very severe Asthma. It effects me 24/7 and has been that way for > about 20 years now. I've been to several Dr.'s and all pretty much take [quoted text clipped - 20 lines] > heard people mention Asmanex. I am not familiar with that. Is there > much success with it where other meds have failed? I suggest that you visit the website of the largest bookstore in the nearest city and type asthma into the search engine at that site. Purchase a book (or books) that have been written by a doctor (asthmas specialist). The book should be written for people that have asthma. There should be detailed information in that book that will help you to become an expert on asthma. There might be advice in the book that will help you. If anyone can suggest an excellent book related to asthma--please post the title of the book and the name of the author. Jason
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miles - 29 Apr 2006 01:39 GMT > I suggest that you visit the website of the largest bookstore in the > nearest city and type asthma into the search engine at that site. Purchase [quoted text clipped - 6 lines] > book and the name of the author. > Jason I've done considerable amount of research on asthma over the years. I also get the quarterly medical updates on asthma that Dr's get. Tough reading for a non-med person at first but you start picking up the lingo.
My trouble is I don't seem to fit any of the standard patterns most asthmatics do. For instance, my asthma is triggered by multiple things. Allergies are certainly a major contributer but I do not respond to asthma drugs or allergy injections etc. that go after that cause. Even the very expensive Xolair injections do little. Xolair seems to have great success with those that have allergy induced asthma. My asthma is pretty much a daily thing. I don't have many bad attacks. Just constant very low lung capacity.
Dr.'s have tried to find other reasons. I also have sudden onset arthritis. So I had blood tests done. ANA scores were off the chart. So I had other tests for things such as Lupus to explain the high ANA. Tested negative.
My immune system is rather weak. I have a heck of a time fighting off infections. It's my belief my asthma, arthritis and weak immune system are all related. So far I have not been able to find the underlying reasons to any of them.
rchrdcarlisle@NOTyahoo.com - 29 Apr 2006 02:35 GMT
> I don't have many bad >attacks. Just constant very low lung capacity. Do you use a peak flow meter? What is your average reading?
>Dr.'s have tried to find other reasons. I also have sudden onset >arthritis. So I had blood tests done. ANA scores were off the chart. >So I had other tests for things such as Lupus to explain the high ANA. >Tested negative. If your ANA were off the chart it sounds like you have some autoimmune disorder even though you tested negative for lupus.
>My immune system is rather weak. > I have a heck of a time fighting off >infections. What kinds of infections are you talking about? Bacterial? Viral? How often do you get infections?
> It's my belief my asthma, arthritis and weak immune system >are all related. So far I have not been able to find the underlying >reasons to any of them. What type of arthritis have you been diagnosed with? If rheumatoid arthritis that would suggest autoimmune disorder that is in keeping with your elevated ANA.
RC
miles - 29 Apr 2006 03:01 GMT > If your ANA were off the chart it sounds like you have some autoimmune > disorder even though you tested negative for lupus. Thats true but tests I had done by my rheumatologist all showed negative.
> What kinds of infections are you talking about? Bacterial? Viral? How > often do you get infections? Common colds. They will linger with me for 1 to 2 months at a time.
> What type of arthritis have you been diagnosed with? If rheumatoid > arthritis that would suggest autoimmune disorder that is in keeping > with your elevated ANA. Not sure what my Dr. called it. It is non-inflammatory and he said drugs like Celebrex won't work.
rchrdcarlisle@NOTyahoo.com - 29 Apr 2006 04:00 GMT >> If your ANA were off the chart it sounds like you have some autoimmune >> disorder even though you tested negative for lupus. > >Thats true but tests I had done by my rheumatologist all showed negative. That does not necessarily mean you don't have an autoimmune disorder. It is just that you don't have the ones that they tested for.
>> What kinds of infections are you talking about? Bacterial? Viral? How >> often do you get infections? > >Common colds. They will linger with me for 1 to 2 months at a time. That is very long to have a cold. When you say they linger what symptoms specifically linger? Runny nose, cough?
>> What type of arthritis have you been diagnosed with? If rheumatoid >> arthritis that would suggest autoimmune disorder that is in keeping >> with your elevated ANA. > >Not sure what my Dr. called it. It is non-inflammatory and he said >drugs like Celebrex won't work. That does not make sense. All arthritis is inflammatory. "Itis" means inflammation. "Arthritis" is inflammation of the joints. The two major kinds of arthritis are rheumatoid which is believed to be an autoimmune disease and osteoarthritis which is not.
RC
miles - 29 Apr 2006 04:47 GMT > That is very long to have a cold. When you say they linger what > symptoms specifically linger? Runny nose, cough? Congestion in chest and sinuses. Others at my work etc. get the same thing, same symptoms but are cleared after a week at most.
> That does not make sense. All arthritis is inflammatory. "Itis" means > inflammation. "Arthritis" is inflammation of the joints. The two major > kinds of arthritis are rheumatoid which is believed to be an > autoimmune disease and osteoarthritis which is not. According to my Dr's there are forms of joint pain they call non-inflamatory arthritis. There is no inflammation of the joints but the pain is very real. They've stated this form commonly is sudden rather than a gradual pain increase with age.
rchrdcarlisle@NOTyahoo.com - 29 Apr 2006 05:49 GMT
>> That does not make sense. All arthritis is inflammatory. "Itis" means >> inflammation. "Arthritis" is inflammation of the joints. The two major [quoted text clipped - 4 lines] >non-inflamatory arthritis. There is no inflammation of the joints but >the pain is very real. I suggest you get a second opinion. If there is no inflammation of the joints then you don't have arthritis. You can have pain for other reasons than arthritis.
Rheumatologists specialize in treatment of arthritis.
Good luck.
RC
miles - 29 Apr 2006 05:55 GMT > I suggest you get a second opinion. If there is no inflammation of the > joints then you don't have arthritis. You can have pain for other > reasons than arthritis. > > Rheumatologists specialize in treatment of arthritis. According to numerous medical journals and Dr.'s non-inflammatory arthritis exists. I've been to 3 rheumatologists who all say the same thing. I'll take their word for it!
Do a google search on non-inflammatory arthritis and see what you find.
00doc - 01 May 2006 01:42 GMT >> I suggest you get a second opinion. If there is no inflammation of the >> joints then you don't have arthritis. You can have pain for other [quoted text clipped - 7 lines] > > Do a google search on non-inflammatory arthritis and see what you find. You are both right. The suffix -itis means inflammation so it should stand to reason that arthritis is inflammation of the joints by definition. Unfortunately, it is an old term that is not always applied with linguistic rigor. Many noninflammatory joint disorders are commonly refered to as arthritis.
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rchrdcarlisle@NOTyahoo.com - 01 May 2006 02:46 GMT >>> I suggest you get a second opinion. If there is no inflammation of the >>> joints then you don't have arthritis. You can have pain for other [quoted text clipped - 13 lines] >rigor. Many noninflammatory joint disorders are commonly refered to as >arthritis. I am confused. Is there no joint inflammation with osteoarthritis? If not what is the etiology of the pain? I was under the impression that there was an inflammatory process in all arthritis.
RC
00doc - 01 May 2006 16:08 GMT > I am confused. Is there no joint inflammation with osteoarthritis? If > not what is the etiology of the pain? I was under the impression that > there was an inflammatory process in all arthritis. Sometimes there is a visible inflammatory component to osteoarthritis and NSAIDs (Motrin, Aleve, etc) are commonly used at the "anti-inflammatory dose"* to treat it. That said, the classic description fo it that you wil find in text books is that it is non-inflammatory. Things can hurt without inflammation. Pinching yourself would be a good example.
* For instance with Motrin at 400mg you pretty much max out the ffects on pain and fever. Docs go to 800mg to get an additional anti-inflammatory effect (and to make it last longer).
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rchrdcarlisle@NOTyahoo.com - 01 May 2006 21:26 GMT >> I am confused. Is there no joint inflammation with osteoarthritis? If >> not what is the etiology of the pain? I was under the impression that [quoted text clipped - 6 lines] >non-inflammatory. Things can hurt without inflammation. Pinching >yourself would be a good example. Yes, but when you pinch yourself it is clear why there is pain. In the case of osteoarthritis what causes the pain? I thought that even osteoarthritis always has some inflammatory component that may be less than rheumatoid but still there.
RC
Bob - 02 May 2006 00:36 GMT >>> I am confused. Is there no joint inflammation with osteoarthritis? If >>> not what is the etiology of the pain? I was under the impression that [quoted text clipped - 13 lines] > >RC In part, it is currently thought that altered nociceptor pathways are involved with the pain associated with osteoarthritis.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1 5283447&dopt=Abstract
miles - 29 Apr 2006 04:49 GMT > Do you use a peak flow meter? What is your average reading? I have a pulmonary test done every two weeks. I do not know the exact flow readings but lung volume averages about 40% of expected.
Jason - 29 Apr 2006 06:32 GMT > > Do you use a peak flow meter? What is your average reading? > > I have a pulmonary test done every two weeks. I do not know the exact > flow readings but lung volume averages about 40% of expected. Have you had a recent chest X-Ray? If not, you should request a chest X-Ray.
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miles - 29 Apr 2006 11:16 GMT >>> Do you use a peak flow meter? What is your average reading? >> I have a pulmonary test done every two weeks. I do not know the exact >> flow readings but lung volume averages about 40% of expected. > > Have you had a recent chest X-Ray? If not, you should request a chest > X-Ray. I've had cat scans and x-rays many times. Shows normal.
Jason - 29 Apr 2006 03:41 GMT > > I suggest that you visit the website of the largest bookstore in the > > nearest city and type asthma into the search engine at that site. Purchase [quoted text clipped - 29 lines] > are all related. So far I have not been able to find the underlying > reasons to any of them. I am not a doctor but have spent time working in a hospital. I know of one patient that had the same sort of problems that you are having. The doctor that treated the person came to the conclusion that the disorder she had was not Lupus but of all of the disorders that he knew about--what she had was more similar to Lupus than any other disorder. Therefore, he prescribed for her the same medications that he prescribed for his Lupus patients. I suggest that you read the following books: "The Acid-Alkaline Diet" by Christopher Vasey, N.D "Stop Inflammation Now" by Richard M. Fleming, M.D.
"Inflammation" and high acid levels are factors in many diseases--including Lupus and Asthma.
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rchrdcarlisle@NOTyahoo.com - 29 Apr 2006 04:02 GMT
>"Inflammation" and high acid levels are factors in many >diseases--including Lupus and Asthma. What exactly do you mean by "high acid levels"?
RC
Jason - 29 Apr 2006 06:24 GMT > > >"Inflammation" and high acid levels are factors in many [quoted text clipped - 3 lines] > > RC Acidity is usually measured by determining the pH levels. In the book that I mentioned, urine pH strips are discussed in detail. The author explains how to maintain normal pH levels by eating a proper diet. The goal is to maintain a neutral pH. People that have no medical problems usally have a neutral pH but various disorders (such as kidney problems) cause people to have high acid levels which causes all sorts of medical problems. Jason
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rchrdcarlisle@NOTyahoo.com - 29 Apr 2006 15:56 GMT >> >> >"Inflammation" and high acid levels are factors in many [quoted text clipped - 10 lines] >neutral pH but various disorders (such as kidney problems) cause people to >have high acid levels which causes all sorts of medical problems. Hate to tell you but that is complete pseudoscientific bullshit. The body maintains pH within a very narrow range through various buffer mechanisms. You cannot change your body pH by diet regardless of what that book tells you.
RC
>Jason 00doc - 01 May 2006 01:45 GMT >>> >"Inflammation" and high acid levels are factors in many >>> >diseases--including Lupus and Asthma. [quoted text clipped - 14 lines] > mechanisms. You cannot change your body pH by diet regardless of what > that book tells you. Exactly right.
Even eating baking soda and drinking large amounts of carbonated beverages will not change the blood pH. They will change the ammonia levels and pH of the urine but not the blood pH.
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Jason - 01 May 2006 03:18 GMT > >>> >"Inflammation" and high acid levels are factors in many > >>> >diseases--including Lupus and Asthma. [quoted text clipped - 20 lines] > will not change the blood pH. They will change the ammonia levels and pH of > the urine but not the blood pH. I found this quote in a book entitled: "Laboratory Test Handbook with Disease Index" written by David S. Jacobs, M.D. and two other doctors: pg. 901--"Urine pH is crude indicator of the acid-base of the body..." One of the conditions associated with acid urine is Metabolic Acidosis.
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00doc - 01 May 2006 16:16 GMT Thus is demonstrated the risks of interpetting tests that you do not understand.
Alison Chaiken - 29 Apr 2006 06:00 GMT > If anyone can suggest an excellent book related to asthma--please > post the title of the book and the name of the author. I liked _Life and Breath_ by Neith Schachter. I found out about it while reading this group, so I'm just passing the advice on.
From: Ellis Date: Tues, Aug 26 2003 12:38 am Email: Ellis <e...@jps.net> Groups: alt.support.asthma
ATS News June 2003 Excerpts: "Neil Schachter, M.D., ATS member and former president of the American Lung Association of New York has authored Life and Breath: Preventing, Treating and Reversing Chronic Obstructive Pulmonary Disease, a book designed to educate the general public on their risk for COPD. ........... Life and Breath also explains how people with asthma can develop symptoms and airway changes similar to those seen in COPD even if they have never smoked. "While doctors continue to argue about the merits of lumping and splitting these diagnoses," explains Dr. Schachter, " there is no doubt that many asthmatics can go on to develop the same pathologic changes as patients with other forms of chronic obstructive pulmonary disease. What this means to me as a physician and to you as a patient is that we need to work together to keep asthma inflammation under the best possible control in order to avoid developing irreversible damage."
More at: http://www.thoracic.org/news/atsnews/news0603/story8.asp
I thought that some of the dietary advice in Dr. Schacter's book was peculiar but the rest of it looks sound.
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Jason - 29 Apr 2006 06:47 GMT > > If anyone can suggest an excellent book related to asthma--please > > post the title of the book and the name of the author. [quoted text clipped - 30 lines] > I thought that some of the dietary advice in Dr. Schacter's book was > peculiar but the rest of it looks sound. Alison, Thanks for your post. I know two people that have asthma and made hard copies of your post and will give them to those two people. I hope that they buy the book and read it. Jason
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NorthShoreCEO - 29 Apr 2006 00:03 GMT Sometimes when your asthma isn't managed well by medication, and you've tried every combination of drugs, it's because the asthma is caused by bacteria. Researchers think asthma has different causes, one of which is bacteria. It's possible that your asthma is either caused by, or has been made worse by, bacteria. Look at the studies and the support forum at www.asthmastory.com to learn more.
miles - 29 Apr 2006 01:49 GMT > Sometimes when your asthma isn't managed well by medication, and > you've tried every combination of drugs, it's because the asthma [quoted text clipped - 3 lines] > at the studies and the support forum at www.asthmastory.com to > learn more. Thanks. I'll talk to my Dr. about it.
00doc - 01 May 2006 01:48 GMT >> Sometimes when your asthma isn't managed well by medication, and you've >> tried every combination of drugs, it's because the asthma is caused by [quoted text clipped - 4 lines] > > Thanks. I'll talk to my Dr. about it. When he is predictably reluctant to prescribe it have a talk about risk vs benefit ratios and compare it to the risk of prescribing oral steroids (which I am sure he does all the time - sounds like not infrequently to you) and the benefits of long term antibiotics as used in kid with acne (which he might not do himself but surely agrees is common.
If he can agree that it is less toxic than prednisone and that you may benefit more than a kid with acne then there isn't much way around prescribing it.
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miles - 01 May 2006 02:53 GMT > If he can agree that it is less toxic than prednisone and that you may > benefit more than a kid with acne then there isn't much way around > prescribing it. There appears to be several types of drugs prescribed for the various forms of bacteria thought to cause asthma. Which one should he prescribe?
NorthShoreCEO - 01 May 2006 04:29 GMT >> If he can agree that it is less toxic than prednisone and that >> you may benefit more than a kid with acne then there isn't [quoted text clipped - 3 lines] > various forms of bacteria thought to cause asthma. Which one > should he prescribe? Tsk, tsk. You didn't go look at ALLLLLLLLLLLLL that information at www.asthmastory.com, did you?
miles - 01 May 2006 14:29 GMT > Tsk, tsk. You didn't go look at ALLLLLLLLLLLLL that information > at www.asthmastory.com, did you? Macrolides, doxycycline, Zithromax were all listed. Other websites on the subject mentioned other drugs as well.
NorthShoreCEO - 01 May 2006 14:36 GMT >> Tsk, tsk. You didn't go look at ALLLLLLLLLLLLL that >> information at www.asthmastory.com, did you? > > Macrolides, doxycycline, Zithromax were all listed. Other > websites on the subject mentioned other drugs as well. Dr. Hahn's protocol can be found on the bottom left side of the home page. The protocol that worked for me three years ago, was Azithromycin - 500 mgs a day, taken for three days in a row, followed by weekly doses of 750 mgs for a total of twelve weeks.
Other doctors use a protocol of two different antibiotics, such as Doxycycline and Azithromycin, but it takes nine months to more than a year to eradicate the bacteria, and I believe patients are on antibiotics every day.
Both of those are in the macrolide family of antibiotics.
00doc - 01 May 2006 16:20 GMT Zithromax/azithromycin, Biaxin/clarithromycin, and erythromicin are all macrolides.
Telethromycin(ketek) is a newer closely related drug that to my knowledge has not been tested for this but in theory should work.
Tetracyclines (doxycycline, minocycline, tetracycline) should work.
Higher generation flouroquinolones (Levaquin, Tequin, Avelox) should also work but no my knowledge only levaquin has been studied for this.
Strangely enough there was study showing some response (it may have been a chlamydia and heart disease study - my memory is foggy) with amoxicillin despite the fact that it shouldn't be active against the presumed cuprit organisms.
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NorthShoreCEO - 01 May 2006 18:45 GMT > Zithromax/azithromycin, Biaxin/clarithromycin, and erythromicin > are all > macrolides. > > Tetracyclines (doxycycline, minocycline, tetracycline) should > work. I knew I should have looked this up. I always want to lump doxy with the macrolides. My bad.
Alison Chaiken - 03 May 2006 05:35 GMT > Telethromycin(ketek) is a newer closely related drug that to my > knowledge has not been tested for this but in theory should work. I saw an article this week in IIRC the _Wall St. Journal_ claiming that Ketek is dangerous. I can't find the link since the first many hits are personal injury lawyers!
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00doc - 04 May 2006 00:16 GMT >> Telethromycin(ketek) is a newer closely related drug that to my >> knowledge has not been tested for this but in theory should work. > > I saw an article this week in IIRC the _Wall St. Journal_ claiming > that Ketek is dangerous. I can't find the link since the first many > hits are personal injury lawyers! Personally, I see no reason to use it and consider it a good marker for a doc that needs to cut back on the free lunches. It is new and not all that novel (which in my book means you should stay clear for at least 1-2 years on those grounds alone) and has tons of drug interactions and adverse drug reactions. I wouldn't be a bit surprised if it is pulled off the market. Your comment about the personal injury lawyers is not surprising to me. Best of all, it costs a mint.
I considered bashing it in my first post but decided to just stick with short, complete, and (relatively) apolitical.
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00doc - 01 May 2006 16:15 GMT The one with the most data and best responses in studies is azithromycin (Zithromax).
Dr. Han's regimen loads with 500mg daily for three days then 750mg weekly for a total of 12 weeks. Then he reasses the patient and considers another 8 weeks for partial responders.
Clarithromycin (Biaxin), doxycycline, and levofloxacin (Levaquin) have all been studied but usually the response rates have not been as high and the treatment durations have had to be longer. Of course, one must always be cautious about comparing non-head to head studies. Johns Hopkins (and a few others) is currently enrolling people in more azithromycin studies.
It may be usefull to check mycoplasma and chlamydia blood titers at the beginning and follow them for response (and later replapse) if they are positive but they have not proved to be very predictive of success so I wouldn't let negative tests prevent a trial. Ditto for bronchial washings.
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miles - 02 May 2006 00:47 GMT > Clarithromycin (Biaxin) I have been on Biaxin for issues other than asthma. It has cleared up the particular problem but never helped with asthma. Only took it for a week at a time though.
NorthShoreCEO - 02 May 2006 00:56 GMT >> Clarithromycin (Biaxin) > > I have been on Biaxin for issues other than asthma. It has > cleared up the particular problem but never helped with asthma. > Only took it for a week at a time though. Doctors who use Biaxin to eradicate mycoplasma or chlamydia pneumoniae, usually pair it with another antibiotic, and the patient is on it for a year or more.
miles - 02 May 2006 01:33 GMT > Doctors who use Biaxin to eradicate mycoplasma or chlamydia > pneumoniae, usually pair it with another antibiotic, and the > patient is on it for a year or more. Whats the ramifications of being on strong antibiotics for such a long period of time?
NorthShoreCEO - 02 May 2006 01:48 GMT >> Doctors who use Biaxin to eradicate mycoplasma or chlamydia >> pneumoniae, usually pair it with another antibiotic, and the >> patient is on it for a year or more. > > Whats the ramifications of being on strong antibiotics for such > a long period of time? Antibiotics in general? That they'll stop working for you when you really need them.
There may be specific risks attached to Biaxin and some of the other antibiotics, but I don't know what they are. You can research them easily, I would think.
The risk of weekly doses of Azithromycin are the usual cramping, nausea, diarrhea (I had none) and it can do damage to the liver if you've already got liver disease. In the years Dr. Hahn has prescribed Azithromycin, he's never seen anyone develop long term problems. Then again, he would never prescribe it for someone with liver disease.
Like doc said, the risk of prednisone taken on a regular basis is far worse.
Alison Chaiken - 03 May 2006 05:38 GMT "miles" <nope@nopers.com> wrote in message
>> Whats the ramifications of being on strong antibiotics for such >> a long period of time?
> Antibiotics in general? That they'll stop working for you when you > really need them. Isn't there a significant risk of developing severe allergies (the anaphylactic shock kind) to antibiotics? Or is that just to the penicillin-class ones?
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NorthShoreCEO - 03 May 2006 12:05 GMT > "miles" <nope@nopers.com> wrote in message >>> Whats the ramifications of being on strong antibiotics for [quoted text clipped - 10 lines] > the > penicillin-class ones? I haven't heard that one, Alison. Maybe doc can answer this.
00doc - 04 May 2006 00:21 GMT > "miles" <nope@nopers.com> wrote in message >>> Whats the ramifications of being on strong antibiotics for such [quoted text clipped - 6 lines] > anaphylactic shock kind) to antibiotics? Or is that just to the > penicillin-class ones? Severe anaphylaxis to macrolides (erythromycin, Biaxin, and Zithromax) is rare. Adverse reactions like nausea and skin rashes are common. There are a few other serious but rare adverse reactions like low white cell counts (agranulocytosis) so it is not without risk. The important thing is to guage the risk vs the risk of not taking it which may be nothing at all or it may be continued symptoms of asthma (which carries risks itself) and exposures to the meds used to treat it (including prednisone and repeated courses of antibiotics).
I think that several short course of antibiotics are worse than one long one both in terms of allergies and resistance - although I can't back up the allergies part with data.
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00doc - 01 May 2006 01:46 GMT > Sometimes when your asthma isn't managed well by medication, and you've > tried every combination of drugs, it's because the asthma is caused by > bacteria. Researchers think asthma has different causes, one of which is > bacteria. It's possible that your asthma is either caused by, or has been > made worse by, bacteria. Look at the studies and the support forum at > www.asthmastory.com to learn more. Believe it or not if you hadn't posted this I was going to suggest it.
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NorthShoreCEO - 01 May 2006 02:11 GMT > Believe it or not if you hadn't posted this I was going to > suggest it. Actually, on this one, I figured we'd be on the same page.
tony broughton - 29 Apr 2006 11:15 GMT > Anyone else here with very severe asthma where most typical asthma drugs > do very little? If so, what have you done to control your asthma? I've > heard people mention Asmanex. I am not familiar with that. Is there > much success with it where other meds have failed? I'd like to extend my sympathy to you, it's a rotten illness to be landed with.
Asmanex is another inhaled steroid, that's supposed to have a better side-effect profile than fluticasone that is the current "gold standard".
It may be that you have "steroid resistant" asthma; this is a recognised form of asthma where the patient doesn't respond to steroid drugs. But you'd need to get your doc to confirm that, don't take my word for it.
If you have strong allergic reactions to the usual allergens (dust-mite, pollen, etc) you can try allergen avoidance to cut down your exposure. If you have pets, get rid of them. If you live near a major road or are otherwise exposed to smoke and pollution, move house (it's easy for me to say but not so easy to do, I know!).
If you're exposed to cigarette smoke in any shape or form, avoid the exposure at all costs.
It sounds to me like you have the same virus infection trigger as me (and most other people with asthma). I find the best treatment is to stay in a warm house, keep the heating up to around 20 degrees C or whatever is comfortable, and get as much physical rest as possible. I find that once I've got one of these wretched chest infections, any physical activity such as driving the car or going shopping etc makes it worse. There's a syndrome where as soon as I start feeling better I want to get back to my life and I go out for a drive or a walk or to work or some other activity, and the next day my chest is much worse. It's boring but forcing myself to stay in and get complete physical rest is the only way I've found to throw off the infection. I'm lucky in that I can do my job at home over the internet (some of the time, anyway) and I find this a real help, the additional physical stress of going to work invariably makes the chest infection worse.
At work I'm in a sealed air-conditioned office where the windows don't open, and colds go round like wildfire; I've taken to finding other rooms on the premises to avoid sitting next to people who are coughing or sneezing. I'm convinced that nearly all of my colds are caught in the work environment; after all, I'm there eight hours a day. Avoiding the germy work atmosphere by working at home has definitely helped cut down the number of colds I catch.
I also take an over-the-counter multi-vitamin/mineral supplement when I get these infections but to be honest I don't know if there is any real benefit. I've tried all sorts of other things - zinc, manuka honey, high dost vit. C, echinacea, fish oil - none seem to have any real benefit.
Another suggestion is to try taking a holiday at a ski resort; before the advent of modern drugs wealthy Edwardian asthmatics used to go to clinics in Switzerland; however the benefit was most likely not the special museli diet or treatment offered by the clinic but more the complete absence of dust-mites in the very dry high alpine climate zone. I have a number of friends who have gone on skiing holidays in the Alps and remarked that their asthma improved a lot in the 2 or 3 weeks they were there. The humidity is very low and dust mites simply can't survive there. Of course the benefit is only temporary unless you can go and live there!
My most important suggestion is to try to get specialist treatment. Find a hospital that has expertise in asthma (preferably one doing research into it) and get on the list of the specialist doing the work. Of course you've probably already done that since you've been given all the latest drugs like xolair.
Tony
miles - 29 Apr 2006 12:09 GMT > Another suggestion is to try taking a holiday at a ski resort I have found many times when up at the ski resorts my breathing improves quite a bit. The high altitude gets to me the first few days but the clean air more than compensates. I'd live up there if there were any jobs. Most of those places are very expensive to live and work is scarce.
tony broughton - 29 Apr 2006 14:17 GMT >> Another suggestion is to try taking a holiday at a ski resort > > I have found many times when up at the ski resorts my breathing improves > quite a bit. The high altitude gets to me the first few days but the > clean air more than compensates. I'd live up there if there were any > jobs. Most of those places are very expensive to live and work is scarce. I've been meaning to try a holiday like that for years but somehow there always seems to be something else that needs doing. Still it's interesting to hear your experience. Another thing I read recently was of a small town in Tasmania (Aussie) where people go, there's some place on the coast there where the air blows across a couple of thousand miles of ocean and is really clean and unpolluted, and it's meant to be good for asthma. I'm afraid I can't remember the location though. Unless you live in Aussie it's rather a long way to go too!
As you say, the problem is getting work in those healthier places. I sure can't afford to live in Switzerland. I had a friend who moved to Boulder, Colorado where there's quite a lot of work, it's at quite high altitude so maybe it's better there, but he said there's quite bad traffic in the city (well, I guess most towns of any size will have lots of traffic).
Tony
miles - 29 Apr 2006 16:58 GMT > I had a friend who moved > to Boulder, Colorado where there's quite a lot of work, it's at quite > high altitude so maybe it's better there, but he said there's quite bad > traffic in the city (well, I guess most towns of any size will have lots > of traffic). Boulder is a suburb of Denver. Plenty of work there but Denver is a large city with considerable pollution. It is possible to live not far outside of town where the air is clean.
tony broughton - 29 Apr 2006 14:26 GMT >> Another suggestion is to try taking a holiday at a ski resort > > I have found many times when up at the ski resorts my breathing improves > quite a bit. The high altitude gets to me the first few days but the > clean air more than compensates. I'd live up there if there were any > jobs. Most of those places are very expensive to live and work is scarce. Well, that does pretty strongly suggest dustmite allergy. I found getting rid of the mites helps some. Briefly, I've done the following: 1. removed all carpets, replaced with hard flooring 2. removed all soft furnishings 3. throw out mattress and replace with airbed 4. chucked out all books and papers that were lying around
The aim is to remove the habitat that the mites like. You have to do the whole lot, it's no good just putting mattress covers on if you still have carpets and a big soft settee full of mites.
Sounds a bit spartan but you get used to it and it's kind of nice living in a place that's not full of clutter.
Might be worth a try?
Tony
00doc - 01 May 2006 02:08 GMT >I have very severe Asthma. It effects me 24/7 and has been that way for >about 20 years now. I've been to several Dr.'s and all pretty much take >the same route. Load me up with pills, inhalers etc. Nothing has ever >made much of a difference. It sounds like you have done the normal stuff like see specialists, look for triggers, treid all the asthma med, explored other diagnoses, etc. A few thoughts:
1) The suggestion of NSCEO to try long term Zithromax.
2) Look at other (non-asthma) meds.
I was going to suggest the diagnosis of steroid resistant asthma that Tony did. If prednisone and all the other inhaled steroids didn't help I doubt there is much chance that Asmanex will. Of course, it couldn't hurt to try.
Sometimes they try other immune modulators like methotrexate and cyclosporin that they usually reserve for other autoimmune diseases in steroid resistant asthma. Your history of seronegative arthritis and positive ANA make this an especially interesting idea.
Plaquenil (hydroxychloroquine) is an antimalarial antibiotic that is fairly benign, cheap, not really immunosupressive, and is used a lot in lupus and rheumatoid arthritis as a "disease modifying agent". It isn't commonly used for steroid resistant asthma so it might be a tough sell. You do have to have eye exams every 6 months because a pignment can build up in the retina that would be reason to stop it. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=2 980288&dopt=Abstract
http://www.newsrx.com/newsletters/Respiratory-Therapeutics-Week/2004-12-27/12272 0043332RT.html
Recently there has been work suggesting a role for a chemical called TNF in asthma. Drugs like Enbrel and Remicade might be effective and are curently being researched. They are injected, do have significant toxicities, and are very expensive (in the same league as Xolair) so they might be an even tougher sell. http://www.medicinenet.com/infliximab/article.htm
You might be interested to know that you are not alone. http://ajrccm.atsjournals.org/cgi/content/abstract/152/6/1753
Lastly, some people with steroid resistant asthma get symptomatic relief from nebulised lidocaine. http://www.respiratoryreviews.com/apr02/asthma.html
-- 00doc
pinkrainbow - 28 May 2006 11:04 GMT what were the warning about advair..i take it, but am being weaned off because i have developed adrenal insufficiency..is this what you are talking about..weaning off it, i am wheezy and feel awful! pinkrianbow
>I have very severe Asthma. It effects me 24/7 and has been that way for >about 20 years now. I've been to several Dr.'s and all pretty much take [quoted text clipped - 20 lines] > heard people mention Asmanex. I am not familiar with that. Is there much > success with it where other meds have failed?
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