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Question regarding symptoms
Hi all, I'm wondering if anyone else with bronchiectasis and/or cavitary lesions has this symptom or feels this way. I had MAC which was successfully treated and I have been off meds since April 2017. I also have mild bronchiectasis and two cavitary lesions that remain stable. For several months after I got off meds I felt really good but for the past month and a half I get afternoon fatigue, don't feel well and have a dry cough. No night sweats or fever.
If I take ibuprofen the cough clears up and I feel better. I don't really know why ibuprofen would cause my cough to clear up and my primary doc seems confused by this also. I've had a chest Xray which is stable since last Xray and my primary doctor only hears a bit of wheezing which is normal for me. Could it be as simple as allergies? Of course I'm paranoid because of previous MAC infection.
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Ling123 your history sounds like mine! Tdrell
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1 ReactionHas anyone else received this email? I posted pictures of it because I couldn’t figure out how to forward the email. I hope you can see the pictures.
I cannot see pictures
@jkiemen I can see the images that you've posted here. Thanks for sharing.
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1 ReactionSorry, I don’t know how else to do it. Maybe you can find it on the Bronchiectasis website. It’s asking for information for the FDA about using a new drug called Linhaliq.
I can see the pictures, @ginak. @jkiemen click VIEW & REPLY in the email notification and you will see the images attached to Gina's post. Here is a related link about the new drug application (NDA) submitted by Aradigm for Linhaliq (inhaled ciprofloxacin) that was recently accepted for filing with priority review status by the U.S. Food and Drug Administration (FDA).:
https://bronchiectasisnewstoday.com/2017/09/26/fda-accepts-aradigms-nda-for-linhaliq-to-treat-non-cystic-fibrosis-bronchiectasis/
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1 Reaction@ginak, Wow! I wish I had seen this before tonight; I would have sent in the info. Aradigme has been working hard to come up with better meds to treat MAC with. The deadline has already past to submit the info. This particular drug has been put on the fast track to get passed by FDA in order to get it to the patients sooner. There has to be a better way for this kind of request to get out there to all of us. Without our voices, drugs don't get approved! Who/how did you get that request? Did you send in the requested info.?
@ginak , Gina, this is the new drug that was talked about at the NTM Conference last spring in D.C. It is the inhaled form of Cipro. It tested favorably and is thought to be easier on the body as it goes directly into the lungs and lessons the hardship on other organs. It also hits it's target directly (the lungs). I am so upset that I missed seeing this as it was time sensitive. I was prepping for our Christmas party, attending holiday functions, etc. I would definitely have responded to that. I hope that others on this forum saw this and submitted the info that they asked for. Right now, we are considered an 'orphan disease' so funding is hard to come by. They NEED our voices to get the message that there are many people affected by this disease. Thank you for posting this Gina. I can see now that I need to be on my toes a bit better.
@windwalker Hi Terri, i received the email from BronchandNTM360social. Although I have bronchiectasis and MAC/MAI, I did not respond because, right now, I didn’t feel my answers could contribute any beneficial information and thought it might actually detract from those who could better answer the questions. I don’t experience any of the exacerbations they were asking about, ive never taken any antibiotics, and aside from the lung clearing exercises with the Aerobika, I don’t feel like it impacts my life. I know they are still accepting responses for the FDA, who will make the final decision, until Jan. 10, if you are interested.
Gina