My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
@francko and @alancady, you both bring up a very important topic here that I would like to see as a new discussion in the Lung Health group. Living with a life-limiting disease can be very hard for family members to accept even when you've accepted and made peace with the reality of limited time.
Might I suggest that you start a new discussion? Here's how:
1. Go to the Lung Health group homepage here: https://connect.mayoclinic.org/group/lung-conditions/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like "Living with Limited Time: Let's Talk about It."
4. Write your message. You can even repeat what you've written in this discussion.
I think this will be a welcome discussion on Connect.
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
Welcome to Connect, @1687gussy. It is a shock to be diagnosed with pulmonary fibrosis. Lung biopsy is not always necessary to confirm PF. Other members here can share their stories about what happens after diagnosis.
You might find this article helpful: 5 Pulmonary Fibrosis Questions for Your Doctor - https://pulmonaryfibrosisnews.com/2017/01/23/5-pulmonary-fibrosis-questions-doctor/
Did your doctor talk to you about lifestyle change or pulmonary rehab?
Hello. I'm new to the lung group. In 2015 I was diagnosed with ILD. The dr.'s explained this was Idiopathic Lung Disease - no known cause, no cure. Now I think doctors use Pulmonary Fibrosis. PLEASE correct me if this is incorrect. I've been to several doctors since then. The second one thought it was Hyper Autoimmune Pneumonitis and put me on Dapsone and Azathiaprine. I was on that for two years. Found another doctor closer to home. He's back to the first diagnosis - ILD - and wants me to take Perfinidone. Based on possible side effects, I declined. I'm a 68 yr. old female with chronic, inoperable back pain, who sleeps with oxygen and sometimes carries a tank with me. My question to @1jonwilcox and @paulallen is - are the side effects worth taking Perfinidone? When not in the grips of the side effects, can you breath more easily. Thank you. @cognac
i have been taking perfinidone for 2 years. it does not cure pf,, but slows it down. at first i had some nausea and tiredness but it wasn't really bad and went away after a few weeks. you have to take after eating. the alternative is an earlier death.
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Did @rayhastings ever post the site for the gov. drug trials
@francko ClinicalTrials.gov
@francko and @alancady, you both bring up a very important topic here that I would like to see as a new discussion in the Lung Health group. Living with a life-limiting disease can be very hard for family members to accept even when you've accepted and made peace with the reality of limited time.
Might I suggest that you start a new discussion? Here's how:
1. Go to the Lung Health group homepage here: https://connect.mayoclinic.org/group/lung-conditions/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like "Living with Limited Time: Let's Talk about It."
4. Write your message. You can even repeat what you've written in this discussion.
I think this will be a welcome discussion on Connect.
Here is the link to the Clinical Trials database https://clinicaltrials.gov/
THANK YOU FOR THE INFO FRANCKO
how are your scans looking now? Do you get out of breath? I am amazed your fibrosis is gone as well
Yes I just found out I have it was very upset with what I had read about it.just had a lung biopsy what come next
Welcome to Connect, @1687gussy. It is a shock to be diagnosed with pulmonary fibrosis. Lung biopsy is not always necessary to confirm PF. Other members here can share their stories about what happens after diagnosis.
You might find this article helpful: 5 Pulmonary Fibrosis Questions for Your Doctor - https://pulmonaryfibrosisnews.com/2017/01/23/5-pulmonary-fibrosis-questions-doctor/
Did your doctor talk to you about lifestyle change or pulmonary rehab?
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Helpful -
Hug
1 ReactionHello. I'm new to the lung group. In 2015 I was diagnosed with ILD. The dr.'s explained this was Idiopathic Lung Disease - no known cause, no cure. Now I think doctors use Pulmonary Fibrosis. PLEASE correct me if this is incorrect. I've been to several doctors since then. The second one thought it was Hyper Autoimmune Pneumonitis and put me on Dapsone and Azathiaprine. I was on that for two years. Found another doctor closer to home. He's back to the first diagnosis - ILD - and wants me to take Perfinidone. Based on possible side effects, I declined. I'm a 68 yr. old female with chronic, inoperable back pain, who sleeps with oxygen and sometimes carries a tank with me. My question to @1jonwilcox and @paulallen is - are the side effects worth taking Perfinidone? When not in the grips of the side effects, can you breath more easily. Thank you. @cognac
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Like -
Helpful -
Hug
1 Reactioni have been taking perfinidone for 2 years. it does not cure pf,, but slows it down. at first i had some nausea and tiredness but it wasn't really bad and went away after a few weeks. you have to take after eating. the alternative is an earlier death.
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Like -
Helpful -
Hug
1 Reaction