[Paula Behnken]

Thank you, Charlene, for the welcome. And, thanks to those who have responded. I’ll try to answer some of your questions.

I had two total-hip replacements in 2011, shortly after a series of urinary tract infections. A UTI can ruin a hip replacement, so to make sure I never got one again, my surgeon put me on a prophylactic dose of nitrofurantoin (Macrodantin).  That drug is the gold standard treatment for UTIs, at a therapeutic dose. I took a low dose for four years with no obvious side effects.

In 2013 and 2014, I had emergency abdominal surgery and was taken off the drug for two months while I was in the hospital. Once I stabilized, my gastroenterologist gave the go-ahead for me to take the drug again. I had lost a lot of weight in the hospital, so didn’t see my continued weight loss as suspicious. I was also very tired and weak from the surgery, but who wouldn’t be after what I went through. Both of those conditions were signs of what was to come, but I didn’t know and no doctors made the connection to the drug.

About four months after I started back on nitrofurantoin, I developed a nagging cough. I also had a pain that was like the one you have when you run very fast in cold air. There was a cold, sharp pain at the bottom of every breath, even when I was sitting down. And, it was August.

Eventually, I was diagnosed with hypersensitivity pneumonitis (HP), caused by the nitrofurantoin. HP is a known side effect of nitrofurantoin, although rare. The risk is something like 1/100,000, and I was the unlucky one. The allergic reaction I had when I started back on the drug filled my lungs with fibroses. HP left me with an interstitial lung disease (ILD), and tests narrowed it down to pulmonary fibrosis (PF).

Doctors looked at CT scans taken of my abdomen before and after surgery, to pinpoint the time of the reaction. They found groundglass lesions and fibroses in the lower area of both lungs, on scans taken after I started back on the nitrofurantoin, but no sign of that earlier.

I was lucky that I stopped taking the drug (on my own) early enough that, although I was left with reduced capacity, I still had pretty good function. That stability remained for two years, but I slid a bit in 2017, possibly from some weight I put on, according to the pulmonologist. Right now, I am concerned that several flares I had this year may have reduced my function even further.

I’ll  find out in September or October when I go in for my annual tests.  I’d appreciate any advice or suggestions anyone has.

I guess the moral of this story is take good care of yourselves and listen to your body.

Wishing every one of you the best.

[Paula Behnken]

Thanks for your comments, Brian. I, too, had joint replacement several years before this happened. For what it’s worth, in my case, the cause for my PF can be traced back to using a drug I was given after hip surgery, to prevent urinary tract infections. The rest is history.

[Paula Behnken]

PDK,

Thanks for the suggestion to wear a mask. Appreciate your advice. I will look into that.