Medical Forum / Diseases and Disorders / Asthma / December 2004
For those that did antibiotic therapy...
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Lissa - 03 Dec 2004 21:52 GMT I have been off of mine for about a month now. I was doing wonderfully. 100% better and tapering off of steriod inhaler. The last day or so I have felt short of breath again. I took my rescue inhaler and it doesn't help much, but it never did. Does this mean that it isn't going to work? Or did I not take the antibiotics long enough? I took them for 14 weeks. I guess I was just feel so great and hopeful. I am not horrible, but do feel a bit of tightness. Has anyone finished the antibiotics and felt a bit worse afterwards, yet still recovered? I know there are only a few of you here. Just not sure where to post questions anymore. TIA!!
Lisa C.
NorthShoreCEO - 03 Dec 2004 22:11 GMT Lisa, you can post questions here or you can always email me if you prefer.
Don't let yesterday's episode bother you. Jim Quinlan cautioned me that it took him a year before he really felt like he was 100% better, and that he had good days and bad days along the way. I found I had good days and great days. Once, I felt short of breath and used albuterol which didn't seem to do anything for me, and later I wondered why I had a little panic thing about it. The state of mind following this treatment is a bit of a roller coaster ride. You're so grateful that you feel better, yet you're also afraid it can't be real and you're going to have a relapse at any time. Wait until you're out in public and someone near you begins coughing. You won't be able to get away fast enough, and then you'll feel stupid for being paranoid. I still do that. Anyway, there were other days I was slightly short of breath, but I just figured it was pollution or allergies and didn't spend much time thinking about it, in an effort to remain positive.
Fourteen weeks is enough time to either eradicate it or improve your asthma if it was brought on by mycoplasma or c. pneumoniae, and IF you were taking Azithromycin. I'm sorry, Lisa, I'm older than dirt and can't remember what you were taking. If you were on Clarithromycin (Biaxin), then no, fourteen weeks wouldn't be adequate. Just take it one day at a time and know that your lungs need to do some healing now after being infected for a while. Give it some time and don't worry or you may feel that tightness in the chest (stress) and think it's something else.
I have been off of mine for about a month now. I was doing wonderfully. 100% better and tapering off of steriod inhaler. The last day or so I have felt short of breath again. I took my rescue inhaler and it doesn't help much, but it never did. Does this mean that it isn't going to work? Or did I not take the antibiotics long enough? I took them for 14 weeks. I guess I was just feel so great and hopeful. I am not horrible, but do feel a bit of tightness. Has anyone finished the antibiotics and felt a bit worse afterwards, yet still recovered? I know there are only a few of you here. Just not sure where to post questions anymore. TIA!!
Lisa C
Lissa - 04 Dec 2004 15:51 GMT Thank you for the replies! It did make me feel better. Some more information. I did take Zythromax, 1000 mg once a week for 14 weeks. I guess the thing that is bothering me is I seem to be getting a cold and am experiencing a bit of shortness of breath. So I wonder if that is the bacteria still hanging around. It sounds like I should not need any more antibiotics than I took though, correct? And maybe it just will take a bit more time. I will let this go a few days and see how I feel. I guess I am not sure if I should call my doctor and try for another 6 weeks or something? Anyway, again, thank you for the replies. I will hang in there and try to be positive. Maureen, you are so right. I am scared to death having a toddler with the flu season coming up. Though I did get the flu shot. :)
Lisa
NorthShoreCEO - 04 Dec 2004 16:13 GMT Lisa, you're suffering the first cold syndrome. Poor Jack went through the same thing not long ago. And speaking of Jack - how about an update???
A cold is viral and an antibiotic won't help it, but those of us who suffered with this know that a cold always ends up with secondary bacterial infections. I guess the virus causes everything to flare up. My first cold (and only illness in the past 18 months !!!!!!!!!!) was completely uneventful, despite my fear that it was going to end up in my chest. It was the most pleasant illness I've ever had, and I couldn't understand what healthy folks whine about. Then again, they're healthy and have nothing to compare it to, so if that's the worse thing they face, I guess I can understand their intollerance. But sheesh!
You can either call your doctor and see what he/she thinks you should do. Or you can wait it out and see how your body handles this cold, and call him/her if and when you feel it's moving into the lungs. You may decide you need to use your rescue inhaler for a few days, and if you need it - use it.
The 1000 mg of Zithromax is a little higher than Dr. Hahn is using now, but based on emails he's sent to someone else whose doctor prescribed that dose, he feels it's not going to increase any risk and is fine.
Remember - your lungs take a while to heal. Dr. Hahn says people have told him they didn't feel really great for several months - and as long as up to a year. You're going to have good and bad days - and even people without any health issues are short of breath when they have a cold, so don't panic and think the antibiotics didn't do anything!!!
Thank you for the replies! It did make me feel better. Some more information. I did take Zythromax, 1000 mg once a week for 14 weeks. I guess the thing that is bothering me is I seem to be getting a cold and am experiencing a bit of shortness of breath. So I wonder if that is the bacteria still hanging around. It sounds like I should not need any more antibiotics than I took though, correct? And maybe it just will take a bit more time. I will let this go a few days and see how I feel. I guess I am not sure if I should call my doctor and try for another 6 weeks or something? Anyway, again, thank you for the replies. I will hang in there and try to be positive. Maureen, you are so right. I am scared to death having a toddler with the flu season coming up. Though I did get the flu shot. :)
Lisa
jackmallory@webtv.net - 04 Dec 2004 22:59 GMT Jack here and feeling quite good. Traveled with the help of my son and got to see my grandchildren over the holiday.
Still tend to be coughing up real baddies the day after I take my weekly 750mgs of Zithromax. So there's still an infection.
Went to therapy Tuesday after a two week absence due to the cold and the subsequent visit out of town. Had a pretty good workout with lighter weights of course.
I do have my flushot. Facing winter with cheer. Thanks for asking, Maureen.
jackmallory@webtv.net - 04 Dec 2004 23:04 GMT I d o try to write clearly. My last post should have concluded
"Thanks for asking, Maureen---Jack-"
NorthShoreCEO - 05 Dec 2004 12:31 GMT Jack, this is great news. Your life has really changed quite a bit already, it seems. You must have had it bad, to still be coughing junk up. Will your doctor allow you to take it for a little longer than the twelve weeks if there are still signs of an infection at that point? I had one woman write to me who had emphysema, and she was going through the same thing, convinced her doctor to let her extend the treatment and it cleared up the whole mess for her. If I recall correctly, she needed another two months before the coughing up stopped.
Playing devils advocate here, but having read your other post about Spiriva, how do you know it isn't the new drug that's having you feel so much better? (or could be both the Spiriva and clearing up the infection) What was the timeframe for starting both?
Jack here and feeling quite good. Traveled with the help of my son and got to see my grandchildren over the holiday.
Still tend to be coughing up real baddies the day after I take my weekly 750mgs of Zithromax. So there's still an infection.
Went to therapy Tuesday after a two week absence due to the cold and the subsequent visit out of town. Had a pretty good workout with lighter weights of course.
I do have my flushot. Facing winter with cheer. Thanks for asking, Maureen.
00doc - 05 Dec 2004 00:00 GMT > The 1000 mg of Zithromax is a little higher than Dr. Hahn > is using [quoted text clipped - 3 lines] > any risk > and is fine. \ FYI - HIV pts with microsporidia/isospora infections (a form of chronic bacterial diarrhea) are given 1250mg weekly indefinately without apparent harm. I don't think there has been much dose ranging work done on this. It may be that higher doses will work better (or not) but there is reason to think we can go higher than Hahn does safely.
> Remember - your lungs take a while to heal. Dr. Hahn says > people > have told him they didn't feel really great for several > months - and > as long as up to a year. Yep - Even with conventional pneumionias it is sometimes hard to distinguish what is from the actual infection (and so should be rapidly clearing with antibiotics) and what is from damage to the lungs (which may take a while to heal).
 Signature 00doc
NorthShoreCEO - 05 Dec 2004 12:17 GMT NorthShoreCEO wrote: >
FYI - HIV pts with microsporidia/isospora infections (a form of chronic bacterial diarrhea) are given 1250mg weekly indefinately without apparent harm. I don't think there has been much dose ranging work done on this. It may be that higher doses will work better (or not) but there is reason to think we can go higher than Hahn does safely.
Right, and that was one of my arguments here when people were screaming about how unsafe it was to be put on weekly doses for twelve weeks. It was actually tested for twelve weeks when initial testing was done. Dr. Hahn, at this point anyway, doesn't seem to think that a higher dose is necessary - but he's tweaked the dosage over the years, so who knows how this will evolve.
Yep - Even with conventional pneumionias it is sometimes hard to distinguish what is from the actual infection (and so should be rapidly clearing with antibiotics) and what is from damage to the lungs (which may take a while to heal).
In my case, I do (or did in March of 2003) have damage to the small airways, and I assumed it was probably a result of having pneumonia five times. Does THAT kind of damage heal in time? I actually feel that my lungs improved beyond the one year mark, but then, having had asthma longer than most who have been treated with antibiotics, I guess that shouldn't surprise me. I'm still in shock at the result (for me), even eighteen months later.
Joy - 04 Dec 2004 00:16 GMT Lisa,
It isn't clear to me that you did take it long enough. There was a discussion I recall about how long should you take the antibiotics if they seem to be working and the consensus was you should take them until you feel normal again. So the fact that you were not completely free of the steroids to me would indicate you needed to be on them longer. But who knows? We are still in the "testing" phase of this treatment.
Is your doctor willing to continue?
Joy
> I have been off of mine for about a month now. I was doing > wonderfully. 100% better and tapering off of steriod inhaler. The [quoted text clipped - 8 lines] > > Lisa C. NorthShoreCEO - 04 Dec 2004 00:52 GMT Joy, that may have been an early discussion? In my later email exchanges with Dr. Hahn, he said he would stop the treatment at 12 weeks and either the person would continue to show improvement in the following months, or would not.
Lisa,
It isn't clear to me that you did take it long enough. There was a discussion I recall about how long should you take the antibiotics if they seem to be working and the consensus was you should take them until you feel normal again. So the fact that you were not completely free of the steroids to me would indicate you needed to be on them longer. But who knows? We are still in the "testing" phase of this treatment.
Is your doctor willing to continue?
Joy "Lissa" <lissan32@yahoo.com> wrote in message news:27df40bc.0412031352.1b41ca0c@posting.google.com... > I have been off of mine for about a month now. I was doing > wonderfully. 100% better and tapering off of steriod inhaler. The > last day or so I have felt short of breath again. I took my rescue > inhaler and it doesn't help much, but it never did. Does this mean > that it isn't going to work? Or did I not take the antibiotics long > enough? I took them for 14 weeks. I guess I was just feel so great > and hopeful. I am not horrible, but do feel a bit of tightness. Has > anyone finished the antibiotics and felt a bit worse afterwards, yet > still recovered? I know there are only a few of you here. Just not > sure where to post questions anymore. TIA!! > > Lisa C.
Joy - 04 Dec 2004 16:22 GMT I read it at Jim's forum. That *might* have been this time last year when I was deciding if I had been on antibiotics long enough. Joy, that may have been an early discussion? In my later email exchanges with Dr. Hahn, he said he would stop the treatment at 12 weeks and either the person would continue to show improvement in the following months, or would not.
Lisa,
It isn't clear to me that you did take it long enough. There was a discussion I recall about how long should you take the antibiotics if they seem to be working and the consensus was you should take them until you feel normal again. So the fact that you were not completely free of the steroids to me would indicate you needed to be on them longer. But who knows? We are still in the "testing" phase of this treatment.
Is your doctor willing to continue?
norman - 04 Dec 2004 07:25 GMT > I have been off of mine for about a month now. I was doing > wonderfully. 100% better and tapering off of steriod inhaler. The [quoted text clipped - 8 lines] > > Lisa C. Maybe you're reducing your steroid too quickly. Try reverting your dosage to the the amount you took before your latest reduction.
Regards Norman Back
NorthShoreCEO - 04 Dec 2004 15:19 GMT No, Lisa, not a good idea. You said you were short of breath, you didn't say you were having an asthma attack. Those of us who have gone through this know you'll have some good days and some days that aren't as good. I just wouldn't taper off more until you've had several good days again.
Lissa wrote: > I have been off of mine for about a month now. I was doing > wonderfully. 100% better and tapering off of steriod inhaler. The > last day or so I have felt short of breath again. I took my rescue > inhaler and it doesn't help much, but it never did. Does this mean > that it isn't going to work? Or did I not take the antibiotics long > enough? I took them for 14 weeks. I guess I was just feel so great > and hopeful. I am not horrible, but do feel a bit of tightness. Has > anyone finished the antibiotics and felt a bit worse afterwards, yet > still recovered? I know there are only a few of you here. Just not > sure where to post questions anymore. TIA!! > > Lisa C.
Maybe you're reducing your steroid too quickly. Try reverting your dosage to the the amount you took before your latest reduction.
Regards Norman Back
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