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Lung & Respiratory Disorders / COPD Message Board

Lung & Respiratory Disorders / COPD Board Index

I have neuromuscular disease and have an indwelling catheter. I was given Macrobid by a Urologist to prevent UTI's. He was going to give me a 3 month course to see if it worked.

After the first round of 3 months, my family practice doctor refilled the prescription and continued to prescribe it for the next 3 years. September '08, I developed what they thought was aspiration pneumonia caused from swallowing problems due to my neuromuscular condition. From September to December I continued to get worse, my x-rays looked horrible, the pneumonia would not respond well to antibiotics but would get some better every time I was hospitalized. I required oxygen 2-3 litres to keep my oxygen level above 90%. In December, I was told that I might not live more than 6 months and that instead of pneumonia they believed I had lots of scarring in my lungs and that there was nothing they could do.

I asked the pulmonologist if it was scarring, why it got better when I would go in the hospital. He said that was a good question and then ordered the first ct scan of my lungs. He worked with a radiologist that specialized in lung diseases and determined I had BOOP (bronchiloits obliterans organizing pneumonia) an interstitial lung disease. The treatment is high doses of steroids. I began 60 mg daily of prednisone and by March had decreased to 40mg. I still wasn't much better.

In March, I switched primary care doctors. I had a UTI at the time and was told to take the Macrobid 2 times a day for 14 days. After that the doctor didn't start me back on the preventative maintenance dose. I saw a new pulmonologist in April and by then was doing remarkably better and was told I could even go off the daytime oxygen use, I felt like a band had been removed from around my chest.

My family doctor then restarted Macrobid in early May because of UTI's. Not knowing that Macrobid could cause or worsen lung problems, I took it, not giving it a second thought. Within a week, I had to go to the ER, my oxygen level was low and I had to go back on oxygen 24 hours a day. They said it was just the BOOP and to keep taking the prednisone.

June 16, 2009, I went to see the pulmonologist again, they moved my July appointment up because I was having so much trouble breathing and was having to have 3 litres of oxygen all the time. I updated my medications and told them I was taking Macrobid, when the doctor saw that, he said, "you have to quit taking Macrobid, it is bad for the lungs". I said fine, no problem and went home and removed it from my pill box.

Later on, I decided to look up Macrobid and find out why it was bad for the lungs and was flabbergasted to find out that it causes interstitial lung disease when used long-term. It said if any pulmonary symptoms begin to stop the drug immediately, right there in black and white on the information from the drug's manufacturer. Every site, even the pharmacy's information said long-term use can cause pulmonary diseases. I don't know why the other doctor's weren't aware of it. I'm grateful for my new pulmonologist. The scarring in my lungs will never get better but at least they won't get worse.

I think the FDA should put the warnings about pulmonary effects from Macrobid at the top and make it more prominent on the information from the pharmacy because if I had known of the effects sooner, I would not have become so sick.

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