1. < Lung Health

Hypersensitivity pneumonitis interstitial lung disease (HSID)

Posted by mec1944 @mec1944, Feb 8, 2019

I have been on prednisone as high as 60 mg and was weened down to 9 mg as a treatment for hypersensitivity pneumonitis interstitial lung disease. I would like to know if there is another medication to use in place of the prednisone that doesn't have the side effects that prednisone does? How do you know as a patient when you can be taken off prednisone entirely and let your adrenal glands take over? What kind of physician would be able to determine if your adrenal glands were not functioning?

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Merry, Alumni Mentor | @merpreb | Dec 22, 2023
In reply to @vic83 "Is there a permanent thread on Connect for Multifocal? We have this chronic form of lung..." + (show)
@vic83

Is there a permanent thread on Connect for Multifocal? We have this chronic form of lung cancer and information is limited so it would be interesting to get an idea of how various cases are playing out. Like how many years since diagnosis, how many nodules do they have, various treatments and complications. I am two years since diagnosis with 2 VAT surgeries and one SBRT with Radiation Induced Pneumonitis. My oxygen levels fall with exertion, could be several reasons.
With which SBRT did you have your flareup? Not with all of them?
Now that tests are posted and one tries to understand them, I looked at my pulmonary function tests. During my pneumonitis, I was almost qualifying for portable oxygen. After Prednisone, my test results came back up but not to the level they were in April - only half way.

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Yes! https://connect.mayoclinic.org/discussion/multifocal-adenocarcinoma-of-the-lung-continual-recurrences/

While I was taking care of my husband and after Liz, @lls8000, became a much needed Mentor for the Lung Cancer groups. I am so grateful for this!

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lenchiksf | @lenchiksf | Dec 22, 2023

What about decadron/dexamethasone steroid ?

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vic83 | @vic83 | Dec 27, 2023
In reply to @merpreb "Vic- I tapered down with the protocol that my doctor gave me. My last pill was..." + (show)
@merpreb

Vic- I tapered down with the protocol that my doctor gave me. My last pill was a 5mg. I don't remember the exact times but it seemed like forever that I was on it. Sixty mg was a lot. I couldn't believe that he was making me do that much. I thought for sure it would be 45 mg.

Over a span of 26 years, I have had two lobectomies, three SBRTs, and chemo once. I am not on any daily medications but do an inhaler. I have never taken any type of immunotherapy.

I will definitely take a look at the information about RRP. Thank you so much.

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Hi Merry

I found this recent article regarding "Management of Lung Cancer in the Patient with Interstitial Lung Disease". It is much easier to understand than the other article about immunotherapy and RRP.
My CT scans also indicate interstitial disease with fibrosis (present from the first CT scan). Based on this article, many treatment options could pose some risk for pneumonitis.
https://academic.oup.com/oncolo/article/28/1/12/6847063

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