A detail I inadvertently didn't mention in the feature is important when having an episode of hemoptysis of the type I experience.
DO NOT LIE PRONE!
Keep the body elevated until the active phase is over. This is to avoid possible aspiration.
http://www.medterms.com/script/main/art.asp?articlekey=2369
And it means propping up so that during the night you do not slip into a prone position.
And a comment about the photos. The collection shows product of one of several daily bleedings that usually repeat four to six times the first three or four days-- I hope that clarifies this aspect of it.
graysmoke
Wednesday, April 14, 2010
Friday, April 9, 2010
THE BIG THREE
What passes for standard treatment for MAI are commonly referred to as the big three. They are ethambutol, rifampin (or related forms) and clarithromycin (or other quinolone).
The customary and usual is taking the three drugs on a three day per week schedule. At fairly high dosages. The duration benchmark is eighteen to twenty-four months, or until sputum culturing is negative. In my case these have not afforded significant change in sputum culturing but the ID docs I have used on consult and when hospitalized, point out that the possible synergistic effect of possibly halting increased severity cannot be determined. While on the regimen, there are requirements for monitoring by having regularly scheduled liver tests, hearing tests and vision tests.
I did not jump at the recommendation to do this back in 2003 when a bronchoscopy revealed the specific mycos; and instead tried inhibiting progression with a alternating antibiotic schedule with the cooperation of my Mayo-Scottsdale pulmonary specialist. This approach was taking a course of levaquin for one week during a month and the next month doing the same with doxycycline. I did that for approximately two years. But when scanning indicated progression I decided to go on the big three.
I did the regimen from mid-2006 until November of 2008 when I asked if I could try a drug holiday. I was only off them until mid-February 2009 when testing indicated to my specialist that I should consider resuming the drugs and I did. I continue taking them.
I do not have many side effects, only the metallic mouth taste from the clarithromycin. Unpleasant but tolerable. So far liver function does not show impairment not do other monitored functions.
It might be worth noting here that regular contagious tuberculosis usually can be eradicated in this day and age with just six months of medications. Not so with the non-tuberculosis mycos.
Some patients are candidates for lung resection or even removal of an entire lung. My lungs are affected in all lobes so I am not a candidate for surgery.
There are pulmonologists that do not advise using the big three as treatment. Some cite the inability of a patient to be compliant with the regimen, (it is my understanding that development of the three days per week regimen has improved compliance). Unhappily the one I am trying here after my relocation falls in the group that is not high on using the big three.. I have only seen him twice and he ordered a lung x-ray, which I reluctantly had even though I have been accustomed to using a CT every six months to track the diseases in the lungs. He also had me do a full PFT.
I will keep my next appointment with him and decide then whether to seek a different specialist.
There are many speculations as to why some people acquire NTM's. Theories range from immune system problems to long standing lung scarring from other infections. Then there is the proverbial chicken and egg dilemma. Most patients also have bronchiectasis. There are various types of "bronch", and I have several, these are diagnosed by patterns in the imaging studies.
So ergo: is it bronchiectasis disposes one to acquiring myco(s) or myco(s) cause the bronchiectasis? In my view both may be true. Personally I had widespread scarring from many bouts of pneumonia during infancy and early childhood those decades past when there were no treatments, I was saved by a dedicated doctor and an aunt who was an RN.
NIH has a number of studies in progress for which I am not a candidate either. But hopefully they might learn more about the diseases and the treatments. Meanwhile one makes an optimal effort to deal with the reality. And exercise and maintaining physical conditioning rank above medications in importance in my layperson's viewpoint.
graysmoke
The customary and usual is taking the three drugs on a three day per week schedule. At fairly high dosages. The duration benchmark is eighteen to twenty-four months, or until sputum culturing is negative. In my case these have not afforded significant change in sputum culturing but the ID docs I have used on consult and when hospitalized, point out that the possible synergistic effect of possibly halting increased severity cannot be determined. While on the regimen, there are requirements for monitoring by having regularly scheduled liver tests, hearing tests and vision tests.
I did not jump at the recommendation to do this back in 2003 when a bronchoscopy revealed the specific mycos; and instead tried inhibiting progression with a alternating antibiotic schedule with the cooperation of my Mayo-Scottsdale pulmonary specialist. This approach was taking a course of levaquin for one week during a month and the next month doing the same with doxycycline. I did that for approximately two years. But when scanning indicated progression I decided to go on the big three.
I did the regimen from mid-2006 until November of 2008 when I asked if I could try a drug holiday. I was only off them until mid-February 2009 when testing indicated to my specialist that I should consider resuming the drugs and I did. I continue taking them.
I do not have many side effects, only the metallic mouth taste from the clarithromycin. Unpleasant but tolerable. So far liver function does not show impairment not do other monitored functions.
It might be worth noting here that regular contagious tuberculosis usually can be eradicated in this day and age with just six months of medications. Not so with the non-tuberculosis mycos.
Some patients are candidates for lung resection or even removal of an entire lung. My lungs are affected in all lobes so I am not a candidate for surgery.
There are pulmonologists that do not advise using the big three as treatment. Some cite the inability of a patient to be compliant with the regimen, (it is my understanding that development of the three days per week regimen has improved compliance). Unhappily the one I am trying here after my relocation falls in the group that is not high on using the big three.. I have only seen him twice and he ordered a lung x-ray, which I reluctantly had even though I have been accustomed to using a CT every six months to track the diseases in the lungs. He also had me do a full PFT.
I will keep my next appointment with him and decide then whether to seek a different specialist.
There are many speculations as to why some people acquire NTM's. Theories range from immune system problems to long standing lung scarring from other infections. Then there is the proverbial chicken and egg dilemma. Most patients also have bronchiectasis. There are various types of "bronch", and I have several, these are diagnosed by patterns in the imaging studies.
So ergo: is it bronchiectasis disposes one to acquiring myco(s) or myco(s) cause the bronchiectasis? In my view both may be true. Personally I had widespread scarring from many bouts of pneumonia during infancy and early childhood those decades past when there were no treatments, I was saved by a dedicated doctor and an aunt who was an RN.
NIH has a number of studies in progress for which I am not a candidate either. But hopefully they might learn more about the diseases and the treatments. Meanwhile one makes an optimal effort to deal with the reality. And exercise and maintaining physical conditioning rank above medications in importance in my layperson's viewpoint.
graysmoke
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