[Patricia]

Maureen,

One more thing. Someone asked whether you had a lung biopsy. I want to make sure you know that open lung biopsy is not needed for diagnosis now. There is something called Envisia Genomic Classifier. This is done on tissue taken from the lungs during bronchoscopy. Then,  in conjunction with HRCT pulmonologist can diagnosis IPF without risky and invasive open lung biopsy even for those without typical lower lung pattern on HRCT. If classifier comes back negative for IUP pattern then is another matter, but mine was positive for IUP pattern despite inconclusive HRCT.  Open lung biopsies can entail long recovery times. Avoid, if possible.

Patricia

[Patricia]

Maureen,

I ached everywhere prior to my diagnosis, shoulder, wrist, arms, legs, back, etc. I had two episodes, one more severe than the other, of seriously painful muscle cramping in my thigh which eventually radiated to my lower leg. Was burning around my knee during sleep and when I woke could barely walk resulting in other injuries to knee and leg from twisting as I attempted to get around and get out of shower/bath. Scan never identified anything more than mild arthritis.

Once I started using oxygen for sleep and anytime I am out and about walking or moving around all aches have subsided. I truly believe now all the aches were due to poor oxygen saturation.

So, I guess I would ask if you are using oxygen.  If not get a sleep study and look into your need for oxygen even with exertion during the day.

Patricia

[Patricia]

Maureen,

My oxygen saturation is normal just sitting still,  but will drop into the 70’s within a minute or two during the 6 minute walk. Nobody allows me to walk longer than that during walk… before they stop me and strap on oxygen, so hard to know how low it might go.
My sleep study was about 3-4 years ago and ended up being an at home study as opposed to in the sleep lab. But, I was diagnosed with mild sleep apnea. (No apnea episodes where I stopped breathing) but 34 episodes where I had what is called hypopnea. My lowest O2 level while sleeping was 85. Total time below 88% was close to 1 hour.

I do not use cPap but do use oxygen. You may need oxygen with your cPap machine. cPap to keep your airway open and oxygen to keep your O2 level up.

When I went on Ofev, the pharmacist asked about joint or muscle pain. My pulmonologist did as well when I started seeing him. So body aches and muscle cramping is very much a part of IPF and a sign you are getting insufficient oxygen to muscles and joints. Even brief periods below 90% saturation can cause damage.

Patricia