smells, smoke, fumes, etc.

[Charlene Marshall]

Hi Paula,

Thanks so much for starting this topic and connecting with us on the PF forums! So sorry to hear about your drug-induced PF, I’ve never heard of this happening from an antibiotic. That must have been incredibly frustrating for you! I’m about 2.5 years post diagnosis, and have seen a slow decline in my lung function (nothing to complain about really though) so I am glad to hear that your lung function has remained relatively stable over the past three years, although I can certainly understand why these two episodes have been worrisome for you!

I can relate to the experience of having environmental factors (smells, smoke, fumes, etc) cause a flare up for you, this happens whenever I inhale secondhand smoke, even traces of it. It is very worrying, and it is frustrating too because you don’t deliberately breathe in these things and you end up paying for it with usually a decline in lung function. Things like campfires, forest fires, fireworks, etc really worry me these days! I agree with you, sometimes these things find us anyways. Do you ever wear a mask when you’re out in public Paula? I find if there is even a small risk of me coming into contact with things that compromise my breathing, then I “bite the bullet” and wear my Vogmask. Have you heard of those? They aren’t fully protective, but about 98% and are much better than the temporary hospital masks we use.

This is definitely something that makes me feel more comfortable in public, when I might not have control over the things I am exposed to. I am also curious to hear from others, so please feel free to share your experience.

Thanks again for writing Paula, and I hope you continue to do well.
Warm regards,
Charlene.

[pdk]

Charlene is right on. I am 3 years post transplant and still wear a mask in public, or outdoors when I walk/exercise. There is no downside to being cautious, because as you know an exacerbation of your condition is hard to come back from.

[Charlene Marshall]

Hi PDK,

Thanks so much for contributing to this forum topic and joining the forums! Congratulations on your transplant, what a wonderful gift you are protecting by wearing your mask in public. I do this as well, and it took awhile to get comfortable with it but the benefits certainly outweigh the risks 🙂

Thanks again for writing, and I look forward to getting to know you more via the forums.
Cheers,
Charlene.

[paula-behnken]

PDK,

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

 

[Charlene Marshall]

Hi Paula,

If you’re interested, I’d highly recommend the Vogmask. They are a bit pricey, but I’ve found them very good for protecting my lungs when I travel, am around those who are sick or smell smoke. Recently I wore it while changing my cat’s litter as well – I’ve heard this is bad for us to inhale – and I couldn’t smell a thing, which was awesome. Just an option for you to consider.

I hope you’re doing well!
Warm regards,
Charlene.

[brent-fain]

I was diagnosed November 2016 with ILD.  IPF was confirmed with a biopsy in July 2017.  I seem to be holding my own.  Doc says that it is due to me being in great shape.  I have not experienced problems with fumes but I do tried to avoid them.  All of this came on me in  few months after a total knee replacement.  I am curious, what antiobiotic caused issues?  I hope you get better or stay steady.  Thanks for  your help.

[Charlene Marshall]

Hi Brent,

Thanks for joining the PF forums and contributing to this topic thread. So sorry to hear of your ILD diagnosis, then IPF as of July 2017 but I am happy to hear that you’re doing well. Being in shape and physically active, though tough with a lung disease, is really important to so kudos to you for sure! Good idea re: trying to avoid the fumes, it is hard to tell what might cause a trigger or an exacerbation until it happens and then it can be quite tough to recover from. At least this has been my experience anyways! So sorry to hear that this all came on after a knee replacement. Did you struggle or experience shortness of breath for long before your diagnosis? I am also curious which antibiotic so hopefully Paula feels comfortable sharing.

Take care Brent, and wishing you well!
Charlene.

[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]

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.

[Charlene Marshall]

Hi Paula,

Thanks for your thoughtful reply to this forum topic, and sharing a bit more of your story with us. I know others, in addition to myself, will find this helpful!

So sorry to hear of your health troubles, especially the “hidden” side effects that eventually led to your diagnosis of PF. You’re right – who wouldn’t think those very common side effects (weight loss, fatigue, etc) wouldn’t be caused by what you had been through.

I’ve never heard of this drug before, and it sounds like your doctor was able to confirm the link between the drug and the HP diagnosis? How scary is that! Those rare side effects can be pretty terrifying and I’m so sorry one of them came to fruition for you. Had you not had the allergic reaction to the drug, do you  know if you still would have developed fibrosis in the lungs, eventually leading to PF? So sorry for all of these questions, I just  hope they might be helpful for others who might have previously or are currently taking this drug. UTIs are pretty common, but I do hope this isn’t the most common treatment for those given the risks!

I can certainly understand your concern re: the flares causing a decrease in lung function. Do you have any symptoms indicating this, ie. increased episodes (frequency and/or length) of shortness of breath, pesky dry cough, more fatigue, etc? I hope this isn’t the case for you and will keep my fingers crossed that your tests in September and October go really well for you.

I don’t have a lot of advice I can share unfortunately, as I haven’t had too many flare ups other than the common cold, and two episodes where I inhaled secondhand smoke and needed to be hospitalized but I  never was told and/or linked any decline in function directly to those instances. I did have an acute exacerbation last May, which was the worst and it was so terrifying – this caused a significant drop in lung function. Where are your pulmonary function tests (PFTs) at now approximately, Paula?

Wishing you the very best as well, and thank you for sharing this with us.

Warmest regards,
Charlene