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Have Bronchiectasis, recently diagnosed with pseudomonas
MAC & Bronchiectasis | Last Active: Oct 17, 2023 | Replies (208)Comment receiving replies
I’m new here and am in need of advice. My doctor wants me to start inhaled Tobramycin. I have Pseudomonas but have only been hospitalized once in many years. I am managing my symptoms with Annoro inhaled powder in the morning plus saline and Ipatropium plus saline in the evening. I also have an Afflo vest which helps. The Tobra scares me because it has side effects and is also something that is going to be required indefinitely. And besides it is time consuming. Can anybody tell me if it really works. Does it make you feel any better at all? And what side effects has anybody here encountered.
Replies to "I’m new here and am in need of advice. My doctor wants me to start inhaled..."
My husband and I both have Bronchiectasis (his is very mild) and we both had Pseudomonas at the same time 5 years ago. Because both of us have other health concerns and were symptomatic, the doc wanted to treat it. We started with oral antibiotics (sorry, which ones are lost in the sands of time.) It took my husband 2 10 day courses and his was gone.
After 6 weeks of 2 different antibiotics, my infection would not budge. A month of inhaled Tobramycin, as annoying as it was, knocked it out. I had many sputum cultures afterward while being treated for MAC, and it never reappeared. The side effects were primarily a sore throat, hoarseness & temporary loss of voice. I treated it with honey & cough lozenges, and it was gone about 2 weeks after I finished the Tobramycin.
With newer information about the damage long-term Pseudomonas can cause, it seems more doctors are treating it aggressively. See: https://bronchiectasisnewstoday.com/treatment-pseudomonas-aeruginosa-infection/
If it would make you more comfortable, maybe seek a second opinion from an infectious disease doc?
Sue
I was recently diagnosed with Pseudonymous after 8 months of worsening cough that affected sleeping and energy level. I was diagnosed with bronchiectasis and MAC 12 years ago. I initially was treated with triple antibiotics, which I tolerated well except for fatigue. I have difficulty producing sputum but it was assumed that it was still present. Fortunately, I have had minor symptoms over the years. Only some coughing spells. These would wax and wane. Some months no coughing.
I was able to walk 3-4 miles per day with no difficulty. Saw my pulmonologist regularly and CT scans showed no changes. When Pseudomonas was diagnosed from an induced sputum sample ( there was no evidence of MAC.) I was started on a 4 week course of Cipro and inhaled Tobramycin. After one week I started to feel better. Then I developed hoarseness, which can be a side effect of Tobi. Told to take a one week break from Tobi. Hoarseness resolved. Then restarted on Tobi but only one dose per day. No side effects. Now feel better than I have been for years. Sleeping well, walking 6 miles per day. I am 72.
My doctor is not planning to continue treatment unless there is a reoccurrence of symptoms. I wonder if I have had Pseudomonas for years but the symptoms just recently became worse.
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Yogama,
The only suggestion I can offer is get a second opinion and follow your gut. You know your body better than anyone and know what your body can tolerate.