Flare up

Posted by lilianna @lilianna, May 29 8:06am

I am having a bad flare up, probably pseudomonas showing it’s vicious side. Last Thursday, before the holiday I had mild sinus infection and I triples nebulizing and aerobika plus vest and it got worse. Cough fever. The pulmonologist on call at my pulmonologist hospital prescribed X-ray, sputum culture Tuesday morning and start same day Levaquin ( like cipro)which I did. And stop for the 10 days azithro. The cough is nonstop, bad, fever gone and I am exhausted and weak. I nebulize 7# sodium chloride four times a day together with aeroclipse and aerobica and vest. Today will take again levalquin. My question is when do you notice change and less cough?I am so weak - if you have any experience with levaquin please let me know. Thank you so much

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Sorry to hear you are ill with a flare up. We have all been there and it's miserable. Levaquin is a powerful antibiotic and with hope and some time you'll feel some improvement. Depending on what they see on X-ray you might feel better sooner than later. Pneumonia takes a long recovery time (at least 2 weeks but full recovery often 6 weeks) bronchitis a shorter recovery time (2 weeks+). Increasing age only adds to the time. Once you get the labs/report back you'll have some more information.

I've had to take levaquin several times and I am careful not to stress my body physically too much when on it. A concern with levaquin is tendon issues. It's rare but it does happen. Reading through various forums one would not think it a rare side effect!

Remember fundamentals of what to do when you're sick -- fluids, rest, analgesics. Airway clearance of course important but you might be knocking yourself out with 4 nebbing/clearance sessions. Hope you feel better soon.

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Thank you scoop. I am reading/ writing it while nebulizing. I have to cut to three times- just not enough energy. But I think the cough is less intense- thanks for a small change. I still don’t have chest X-ray results- Memorial Day put radiologist behind I was told and also” chest X-ray “ are their “least priority”I have to wait yet but three days is a long time- frustrating and maddening. Thank you for all good thoughts

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@lilianna

Thank you scoop. I am reading/ writing it while nebulizing. I have to cut to three times- just not enough energy. But I think the cough is less intense- thanks for a small change. I still don’t have chest X-ray results- Memorial Day put radiologist behind I was told and also” chest X-ray “ are their “least priority”I have to wait yet but three days is a long time- frustrating and maddening. Thank you for all good thoughts

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Hang in there, Lilianna, and I’m sorry you’re going through this tough time. I’m glad the cough is less intense - hopefully a sign that your body is on the mend and responding to the meds. Try to rest if you can and know we are here for you.

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I recently had a flare up also. I too stopped Azith and began a course of Levaquin. My coughing became much better, however, I began to wheeze so much that it felt like I had asthma. Of course the usual treatment for this is Prednisone. So I was given a 7 day course and instead of getting better, the wheezing became worse and my cough sounded different as well. I have been off the Pred. for 3 days now and the wheezing is better. I think I may have become sensitive to Pred. now. I will talk to my Pulmonologist about it. I am 74 and have had BE since age 16. So I have been treated with Pred. many times. I hope the Levaquin helps you, but I think it's just as important for you NOT to exhaust yourself through your airway clearance treatment. Maybe stop the vest and dial back on the number of times you nebulize. You need to let your body recover too.

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Hello everybody who supports me here. My respiratory culture results came back and it shows asperguillus species so from what I read levaquin is not the medication for it. It’s fungus and I did not have it before. I still cough so is explains why levaquin does not help me feel better. If you had it how were you treated. I just saw the results and am in shock- it did not sink in yet.

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@lilianna

Hello everybody who supports me here. My respiratory culture results came back and it shows asperguillus species so from what I read levaquin is not the medication for it. It’s fungus and I did not have it before. I still cough so is explains why levaquin does not help me feel better. If you had it how were you treated. I just saw the results and am in shock- it did not sink in yet.

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I was diagnosed with Aspergillus in fall 2022, along with MAC and pseudomonas and BE. They put me on antifungal (i think it was clotrimazole, but not 100% sure, I am terrible with names) for 3 months and it eradicated it: the bronchoscopy 1 year later showed NO fungi of any sort. The 1st month of treatment was hard for me because my doc had told me he didn't think I had asthma and that I should stop taking Advair. Restoring Advair after one month eliminated side-effects, the last 2 months of treatment were easy and very effective. My SpO2 went from 93 to 98. They also gave me Budesonide to nebulize during treatment. It probably helped too. Pseudomonas were treated during dec 2023 via IV antibiotic and cipro. I started Azithromycin and Rifampin for MAC but could not tolerate them so I stopped. Switched doctor, the new one put me on airway clearance with 3% and acapella. This is helping a lot.

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@gigiv

I was diagnosed with Aspergillus in fall 2022, along with MAC and pseudomonas and BE. They put me on antifungal (i think it was clotrimazole, but not 100% sure, I am terrible with names) for 3 months and it eradicated it: the bronchoscopy 1 year later showed NO fungi of any sort. The 1st month of treatment was hard for me because my doc had told me he didn't think I had asthma and that I should stop taking Advair. Restoring Advair after one month eliminated side-effects, the last 2 months of treatment were easy and very effective. My SpO2 went from 93 to 98. They also gave me Budesonide to nebulize during treatment. It probably helped too. Pseudomonas were treated during dec 2023 via IV antibiotic and cipro. I started Azithromycin and Rifampin for MAC but could not tolerate them so I stopped. Switched doctor, the new one put me on airway clearance with 3% and acapella. This is helping a lot.

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Thank you. When something new comes up I panic then I just adjust to whatever I have to. Hopefully I will talk to my pulmonologist today ( again Friday) and she will decide what to do and decide smart because she is always cautious- good or bad? So there is hope. Strange thing is that resp culture did not show pseudomonas second time in two months( sleep I guess because they don’t disappear)

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@lilianna

Thank you. When something new comes up I panic then I just adjust to whatever I have to. Hopefully I will talk to my pulmonologist today ( again Friday) and she will decide what to do and decide smart because she is always cautious- good or bad? So there is hope. Strange thing is that resp culture did not show pseudomonas second time in two months( sleep I guess because they don’t disappear)

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To continue my story. The pulmonologist emailed me that chest X-ray does not show changes so the flare up is not from aspergilus- it would show as aspergilus pneumonia and then my symptoms would be much more severe. So I stay on levaquin and do the airway clearing and nebulizing and wait for better. I did not have a chance to ask what is “ severe symptoms”from aspergilus because it was just an email and actually her nurse emails me always on her behalf. So if your aspergilus was treated, what exactly symptoms did you have. I am so new to the flare ups. I think I don’t even know how to recognize one.

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@lilianna

To continue my story. The pulmonologist emailed me that chest X-ray does not show changes so the flare up is not from aspergilus- it would show as aspergilus pneumonia and then my symptoms would be much more severe. So I stay on levaquin and do the airway clearing and nebulizing and wait for better. I did not have a chance to ask what is “ severe symptoms”from aspergilus because it was just an email and actually her nurse emails me always on her behalf. So if your aspergilus was treated, what exactly symptoms did you have. I am so new to the flare ups. I think I don’t even know how to recognize one.

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I had Aspergillus diagnosed a few years ago through sputum sample. At that time I knew I had Bronchiectasis but not MAC. I was sick with the same symptoms as a flare-up… cough, fever, fatigue. However, I am a rare bird who doesn’t produce sputum. I can only produce when I am sick.
When labs came back with Aspergillus, doc but me on low dose of prednisone for 3 months. That was it. I still show antibodies in my blood work for it to this day.
Hope this helps! Dee

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@nana43

I had Aspergillus diagnosed a few years ago through sputum sample. At that time I knew I had Bronchiectasis but not MAC. I was sick with the same symptoms as a flare-up… cough, fever, fatigue. However, I am a rare bird who doesn’t produce sputum. I can only produce when I am sick.
When labs came back with Aspergillus, doc but me on low dose of prednisone for 3 months. That was it. I still show antibodies in my blood work for it to this day.
Hope this helps! Dee

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Hi dee. You are not that rare. I don’t produce sputum generally. Even now being sick I can spit only some clear mucus but cough is baaad. Now I think it looks like thrush on my tongue although I am doing everything possible to avoid it. Thank you for support and have a good day

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