Sue Ann
Forum Replies Created
-
I was diagnosed with both early in 2020. CT indicated IPF, but biopsy came back showing Granulomas. My pulmanologust at Cleveland Clinic said Sarc is rare, IPF is Very rare, and to have both is extremely rare. I have osteopenia, so steroids were never an option, so sarcoidosis has gone untreated. I have been on Ofev, and switched now to Esbriet, but neither has helped much. My last PTF had a huge decline. It has been very difficult to know what is affecting my lungs more…IPF or Sarc. The coughing is about killing me, and can be blamed on either and both.
Have you had a biopsy, and does your doctor have experience with either of these diseases? Finding one to treat both can be a challenge. Even at Cleveland there are docs that specialize in one or the other. Having both makes them all look at you like you have horns growing from your head.🤨
-
Steve,
I try to stay away from scents and fragrances since they make my lung feel like they are constricting, so I have little to offer you about oils.
BUT, I am very curious what you have done to be able to go from 2 fights of stairs to 40? Despite being on both antifibrotics, doing pulmonary rehab, I’ve really declined in the last 6 months. What has helped you improve?
Sue
-
Chris,
My situation sounds very similar to yours. SOB a lot, but O2 is low to mid 90’s. Dr’s explanation leaves something to be desired.
I have the same questions! Thanks for starting the thread.
S.
-
Hello,
I’m new to the forum, just diagnosed January 2020 with mild IPF. Started Ofev about a month ago with few side affects. I’m blessed in that aspect. Still trying to learn symptoms to attribute to IPF, and environmental influences that bother my lungs. My lungs burn most of the time and I’m wondering if this is common for other IPF sufferers? My PFT results are very good, considering the scaring I have. I look forward to hearing about others’ experience. Thanks!
Sue