POZ Community Forums
Main Forums => Living With HIV => Topic started by: David_CA on February 17, 2011, 04:12:49 pm
-
Ever since I had PCP pneumonia (late '06), breathing hasn't been the same. My lung capacity is reduced, but even breathing has become a bit more difficult... especially when exercising or exerting. It's really been bothering me for a while. I had a lung / breathing test a couple of weeks ago. It involved a machine measuring me taking normal and deep breaths before and after albuterol. The results showed that I have 'mild to moderate obstruction' (I think that was the word) and that albuterol helped. I've always had sinus and allergy issues, but have never had asthma-like symptoms.
Today, my doctor called in prescriptions for albuterol and Asthmanex. The albuterol doesn't sound so bad, but the Asthmanex is a bit odd; one has to rinse one's mouth after using it to help prevent thrush! That just seems kinda worrisome to me. I'm curious if others are using these inhalers and how well they're tolerating them. I guess another couple meds added to the daily arsenal isn't so bad... especially if they help with the difficulty I have breathing.
-
David:
The way I understand -- I've had several pulmonary function tests due to scarring in my lungs associated with two serious bouts of bacterial pneumonia -- if your lung function normalizes after albuterol administration, the mild-to-moderate obstruction noted during the first part of the testing is chalked up as being due to asthma. If, however, pulmonary function doesn't normalize after albuterol administration (and your FEV1 doesn't improve by at least 25 percent), chances are you're dealing with some sort of chronic (irreversible) obstruction.
You smoked heavily for a lot of years, right? This could certainly be a factor. Scarring in your lungs, due to your PCP history, may also be a factor.
As for the Asmanex, the reason you'll need to rinse your mouth out after you use it is because it contains mometasone, a corticosteroid that can weaken the various immune cells in your mouth. Hence, the thrush and oral hairy leukoplakia risk.
Tim
Edited to add: One bronchial drug you may need to stay away from -- notably if you're on a Norvir-inclusive ARV regimen -- is Advair. Norvir can increase blood concentrations of one of the active ingredients in Advair, salmeterol, which can cause all sorts of problems, including an abnormal heart rhythm. Asmanex doesn't contain this drug.
-
David:
The way I understand -- I've had several pulmonary function tests due to scarring in my lungs associated with two serious bouts of bacterial pneumonia -- if your lung function normalizes after albuterol administration, the mild-to-moderate obstruction noted during the first part of the testing is chalked up as being due to asthma. If, however, pulmonary function doesn't normalize after albuterol administration (and your FEV1 doesn't improve by at least 25 percent), chances are you're dealing with some sort of chronic (irreversible) obstruction.
You smoked heavily for a lot of years, right? This could certainly be a factor. Scarring in your lungs, due to your PCP history, may also be a factor.
As for the Asthmanex, the reason you'll need to rinse your mouth out after you use it is because it contains mometasone, a corticosteroid that can weaken the various immune cells in your mouth. Hence, the thrush and oral hairy leukoplakia risk.
Tim
Thanks Tim. It sounds like I may have a bit of both. I do have reduce lung capacity (scarring), and perhaps that's more noticeable due to an existing (or developed) obstruction / asthma... or asthma is making the lung issue more noticeable. I smoked fairly heavily for about 5 years, but I quit that almost two pack per day habit in December 1990.
-
Tim,
I was curious about what you said about lung scarring from bacterial pneumonia. Is scarring a usual complication or something rare--or just depends on the person and how severe the pneumonia was? Does the damage present soon after having pneumonia, or can it take a few years to develop? And, does the state of the immune system following pneumonia predict whether you'll get lung damage?
Having had bacterial pneumonia myself, I sometimes notice I'll get out of breath just walking and especially when exercising. I've dismissed it as anxiety when it happens when I'm not exercising. When I am exercising, I've dismissed it as gaining 20 pounds since dx and just being out of shape. So, I guess my question would be---If you had lung damage, you'd know it and know it wasn't just anxiety or from exercising, because it would always be present? Someone told me you could have some scarring, but wouldn't notice it possibly for a few to many years--because the scarring keeps getting worse as time goes on, even if you never had another lung infection.
-
Hey David,
What Tim said.
I have been on inhalers like those prescribed for you for a number of years now.
(If you remember, when we were in Mexico City I developed a case of thrush from using Advair.)
I am presuming that is the same reason they tell you rinse with yours.
I usually try to use the inhaler in the morning and then brush and rinse. It works out well.
In the evening, when I do my second dose, I just make sure to rinse well. If in doubt, a weak solution of hydrogen peroxide and water works well, just remember not to swallow. (Note: I use a quarter hydrogen peroxide and the rest water by volume.)
You can also use salt water, which works just fine. Steer clear of rinsing with sugary liquids.
I also keep Albuterol on hand for emergency fixes, such as if I have a problem after exercising, or when I visit friends who smoke.
Since I have issues with COPD (Chronic Obstructive Pulmonary Disease) as a result of my smoking for 32 years, I am pretty sure my damage is permanent.
I do find the inhalers make life better for me.
Let us know how it goes, hon.
HUGS,
Mark
-
Hi Ted:
I hope my note to David didn't come off scarier that it needed to be.
Every situation is different. Long story short, I was treated for non-Hodgkin's lymphoma back in 1997/1998 and my only major problem during therapy was two bouts of bacterial pneumonia.
As is routine following NHL treatment, I had regular x-rays and CT scans for several years. It was six or so months after my second bout of pneumonia that the scarring at the base of both lungs was detected. I was referred to a pulmonologist and, after a slew of tests (including radiology and pulmonary function), was told that my lungs didn't exactly look gorgeous but were functioning just fine -- I learned that scarring is a possible long-term consequence of pneumonia and that it can cause restrictive disease (i.e., an inability to fill the lungs with air), as opposed to obstructive disease (i.e., an inability to effective move air out of the lungs).
I faithfully returned to the pulmonologist every couple of years, without any changes in the scarring or pulmonary function. And because I was a smoker for much of my 20s and early 30s, I figured it best to stay on top of it.
Approximately two years ago, I had a terrible winter -- felt like I couldn't breath for months -- and went back to the pulmonologist. While I didn't have any restrictive problems, which is determined by measuring the volume of air your lungs can hold and the amount of oxygen reaching the blood, I was experiencing obstruction (determined by measuring the amount of air you can force out of your lungs during the first second of exhalation, or FEV1). But, like David, my lungs responded well to albuterol before the second round of pulmonary function testing and, as a result, was told that I was having a really bad bout of acute bronchitis. I haven't had any significant problems since, though I do keep an inhaler if I experience any problems, usually when I develop a cold (exercising isn't a problem for me, though it sucks to know that every time I get a sore throat, I know exactly where it's going to end up).
It was my smoking -- not the scarring in my lungs -- that weakened my lungs defenses a bit, though I technically don't have COPD (at least not yet; it can become an issue, even if someone quits heavy smoking years before). Inflammation associated with HIV probably didn't help matters (COPD seems to be more common, at earlier ages, in people living with the virus).
The bottom line:
1) Scarring is not uncommon in people with a history of pneumonia, but it isn't necessarily associated with any respiratory problems.
2) The only way to know anything about the health of your lungs -- acute vs. chronic problems; restrictive vs. obstructive disease; being out of shape vs. underlying pathology, etc. -- is to report to a pulmonologist for pulmonary function testing.
Tim
-
David
I was on a bunch of stuff for the 6 months or so after I got out of the hospital in 2006 starting with Advair and albuterol/nopenex. The Advair did nothng for me so we dumped it and went to nasonex (?) for a while. I stayed on the albuterol a little longer into early 2007.
Eventually I was able to get off all of them, but my pulmonologist did tell me to keep albuterol on hand in case I should need it. I haven't used it in a couple of years though.
I get a PFT and see the pulmonologist every 6-12 months -- the PFT's have been absolutely clear for the past few years and I asked if I could stop them, but he said I should plan on getting them every year.
Even though the PFT's are good, I've noticed that colds settle in my lungs -- in 2010 I wound up with a case of bronchitis that felt like a repeat of PCP (I went back on drugs for a month or so for that --singulair and pulmichort -- note, both of them have an interaction warning with norvir). And now that I'm writing this up I realize that I'm into the third week of a cold, with a lot of deep coughing, hmmmm...
I guess my experience has been that sometimes these drugs don't do much and sometimes can be temporary and that they often changed on a follow-up visit. Do you have a date to follow up with your doctor?
Best wishes
A
-
I had video laryngoscopy to get a biopsy a few months after I got out of the hospital in 98 and I was diagnosed with BOOP (Bronchial Obliterans Organising Pneumonia) as a result of having PCP for a good 8 months (thank you UC Davis). That and having to take prednisone for two years really messed me up for a long long time. In fact I continue to be susceptible to getting pneumonia (which I'm recovering from now).
Have they done any biopsies or video laryng. ?
Hope you get some answers/resolves soon
-
To kind of follow up on all of the posts...
I thought my issues were due to post-diagnosis anxiety. No doubt some were, but when it got to the point that I could barely breath or had enough energy to walk across the yard, I knew something was up. Thinking back on it, I most likely had the PCP for several months. Before all of this, I had great lung capacity and almost never got out of breath. Afterward, I'd find myself not breathing sometimes... kind of like taking a break from it, as it was too tiring. It makes me think of sleep apnea but while awake - awake apnea, maybe? I did the breathing exercises while on the mend from the PCP, but my capacity was never all that good. I don't have much energy, get tired easily after activity (though a very short rest to catch my breath would energize me), get sleepy and yawn excessively during exercise (exercise related asthma), etc. I'd never experienced any of these pre-PCP.
Last night and this morning I used the albuterol, which seemed to make breathing a LOT easier. I picked up the Asmanex today, dosed, and rinsed my mouth out as instructed. It seems to help even more. I tried the lung exercise thing again last night and today. I can usually do somewhere around 2200, last night was around 2600-2700, and today was a bit over 3000. Trying as hard as I have in the past, I've never gotten that high (on the gauge!) since PCP.
I'm supposed to contact my Dr after before filling this Rx again for a follow-up and go from there. Thanks for all the comments, thoughts, etc.
David
-
Thanks Tim and David. I'm sure I'm just having anxiety and being out of shape issues, but I will watch out if things get worse. I'm not comparing myself to your issues, David. I didn't want ya or others to think that. It was just good to get educated about it just in case, and to know what to look out for as time goes by.
Tim, I did just want to say that many of us learned more about you, first of all. But, you gave such an easy to understand, but very intelligent response on this topic, that I think someone, or many people, will come across this thread having breathing issues and learn so much from your explanation. And, I'm not being a brown-noser..lol.
-
Hi,
I saw this post about your lung and breathin issues as well as the sinus problems. I used to have the same trouble until I moved west to CO. After some initial adjustment I am way healthier as far as breathing.
No more Bronchial issues or sinus issues.
Hope this helps.
S
-
I experienced similar problems after my PCP in 1995.
However, I found out the I sometimes suffer from hyperventilation, triggering a feeling of not being able to breath well.
Since I started practicing yoga a couple of hours a week a year ago, my breathing has improved a lot. But still, I feel as if my post PCP capacity is lower than before.
xx Hermie
-
I experienced similar problems after my PCP in 1995.
However, I found out the I sometimes suffer from hyperventilation, triggering a feeling of not being able to breath well.
Since I started practicing yoga a couple of hours a week a year ago, my breathing has improved a lot. But still, I feel as if my post PCP capacity is lower than before.
xx Hermie
Hey Herman,
It's always good to hear from you! I'm finding that daily use of Asmanex and the use of Albuterol as needed are helping a lot. Evidently, I don't have COPD, but I do have obstructive airways. I notice that if I miss a dose of the Asmanex, breathing is difficult, and I feel like I did pre-inhalers. Perhaps you have something similar. I'm not sure of how things work there, but maybe you can ask your Dr. to have a breathing test (I don't remember what it's called) to find out. My breathing isn't 100% of what it used to be before PCP, but it's way better than it has been since.
Hugs,
David
-
Hello Everybody i am a nonsmoker that was given the beathing test at the VA. They said i had copd. They put me on Asmanex, Proventil and Foradil aerolizer and they together seem to work. I am allergic to Bactrim and Dapsone so when my t-cells got low the Doctors decided to give me Pentamidine infusions. Those made me really sick so They decided to give me one Pentamidine breathing treatment which felt like it burnt my lungs. It was after that i started having more problems breathing. That Pentamidine is nasty.
-
Hi David,
Thanks and good to read you.
I will indeed schedule such a breathing test. That will make clear if and what damage has been done.
hugs
Hermie