Bronchiectasis and staving off recurrent infections
I'm 54, nonsmoker, and was diagnosed with bronchiectasis and mild asthma 3 years ago after a bad run of double pneumonia. The infections are becoming so frequent -- from a few months apart before to a couple of weeks. When I get infected, I go on 14 days of levacquin (750) and prednisone (40 and taper). It seems to work, but I get sick again very quickly. The symptoms are sore throat, major sinus issues, then coughing, bronchitis and fever. Also, my ability to think, work and engage in life is greatly compromised.
Has anyone worked with someone in the immunology field to try and build up their immune system? Is this done? Also, would it help to get vitamin injections? Any other ideas? I am desperate!
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Hi Ann, thanks for the reminder to look beyond the "usual culprits" when figuring out a recurrent infection. My primary looked carefully at my sinuses and ears - both long term problems for me - when I had recurring asthma exacerbations. It was on just such an exploration - looking for latent pneumonia - that my MAC was discovered.
You just gave us a good reminder of how interconnected our body systems are.
Have you been able to get rid of the sinus infection, or just control it?
Sue
The first year I was sick, I had sinus surgery to straighten the deviated septum him so they could get the instruments in to open up the passageway into the infected sphenoid. It was a long and awful surgery and it took quite a while to recover, but it did help. I had a kind of a continuous runny nose on that side, so there was a second sinus surgery two years later which helps with that a lot of the openings between the sinus passages just weren’t draining very well. The sinus rinses with budesonide really help keep that under control now. I do that twice a day as well as nebulizing and pulmonary vest 2 times daily. It would be a big deal if I could get all this management bronchiectasis down to once a day instead of twice, but it just doesn’t seem like I’m able to do that. I think I’ve gotten away with that twice in eight years. I’m really trying to not let this thing control my life, but…..
The sinus problems seem also to be a management situation. However I don’t have any problematic allergies and before the original infection in 2013 I never had lung congestion issues. But it just seems to be that the mucus that lungs and also sinuses produce is really tenacious stuff. Takes a lot of acrobatic coughing to clear it from lungs.
I've had questions that go along the same line--sinuses or lung. I use the vest when I neb and sometimes it opens my sinuses and I have to blow. I also cough up something that is very different during the day (when not nebbing) that I feel comes from sinus drainage. It is well formed and stays together when I "hawk" it out. What I cough up during or just after nebbing is more stringy in consistency. I ask my pulmonary doc if the stuff I hawk up can be sinus getting into my throat and not from the chest. He very quickly said no, it is from the lungs. I dropped that conversation but because of the feeling in my sinuses just before and after I cough this stuff out is too closely related. Has anyone else experienced this? My plan is to collect a sputum from the ?? sinus stuff and submit it for testing. I guess they can tell the difference in the lab--maybe. Comments please.
I want to know about the budesonide rinse. I have chronic post nasal drainage. Docs have prescribed 3 different prescription nasal sprays and all make breathing more difficult although they help dry up some of the drainage. ENT suggested that I just stick to nasal rinses. I think I could do nasal rinses every other hour and continue to get thick clear stringy mucus. I would like to find somthing that would help the sinus and I believe that would decrease some of the muuc in the lungs.
Hi, Raney - There are two kinds of rinses I am on right now. Both come from the compounding pharmacy at Mayo Clinic. I have to pay out of pocket for both as they aren’t covered by insurance. Depending on the specific problem being addressed they last quite a while and are likely temporary prescriptions, although I don’t know yet how long.
One is budesonide in a capsule form - NOT for swallowing. You break it open and add to the sinus rinse bottle along with the saline packet, shake up the suspension and rinse as usual with the NeilMed system. It is a steroid.
The second is called cefTAZidime and is a clear liquid that has to be refrigerated. It is to treat pseudomonas aeruginosa, which has been an ongoing problem. Dr. said to tilt head way back and hold in to help get into forehead sinuses, etc. I lay on the floor to do this and it is a bit of a hassle but it has helped get rid of sinus junk that drains down the back of my throat. Doc said I may be able to just add it to the bottle rinse eventually. I do all this stuff twice a day.
I hope you find this helpful!
Annfl
Thank you. I find this veery helpful and will ask my ENT about it. I do not go to Mayo, but would like to in order to get all the problems addressed. Now it is all piece mill and a drug for one problem conflicts with a drug for a different problem.
very helpful. thank you
I know exactly what you mean about treatments conflicting with each other - everything becomes something of a two-edged sword.
I was on prednisone on and off for 9 years. It caused me a tremendously weight gain in which caused more problems with my lungs. My new Pulmonologist took me off all steroids and said that’s what caused my Bronchiectasis to flare up and now I have Tracheobronchomalacia (collapsed airways). I advised you to be careful. I have 40lbs to loose now. Good luck. Steroids are not good for us. Research is important.