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vaugen (@vaugen)

IPF How To Cope with Sick Feelings

Lung Health | Last Active: Oct 19, 2022 | Replies (62)

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@colleenyoung

Welcome to Connect, @vaugen.
I’d like to introduce to a few members who also have idiopathic pulmonary fibrosis (IPF). Please meet @tula @steve1948 @rayhastings @oliver22 @loisblo @agullotti @kelloggk @raincrowe @lydoff65 @dfay and @myiokubo.

Vaugen, you mention a number of side effects that you’re experiencing. I wonder if they might be a combination of side effects of IPF and/or the medication you’re talking: N-acetylcysteine (NAC). According to the following 2 articles IPF can cause your muscles and joints to ache and NAC’s side effects include tightness in chest, fever, nausea and more.
– Pulmonary fibrosis symptoms http://mayocl.in/2fPg1ds
– Acetylcysteine (Inhalation Route) side effects http://mayocl.in/2ntl8Tp

I also encourage you to read and take part in this discussion on Connect:
– Pulmonary Fibrosis http://mayocl.in/2ntrBxC

Vaugen, did your symptoms appear once you started NAC? Are you on oxygen?

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Replies to "Welcome to Connect, @vaugen. I'd like to introduce to a few members who also have idiopathic..."

In my case, I have never smoked except for one puff at age15, It hurt! I was a 105 MM Field Artillery safety officer ffight out of college from 27 Sept 1964 for about 1 year, then Assistent Clun Offocer for aniother year and 2 months. Plus p9oi2 2-week mmer camps afgain as artillery safety officer.. We were using repackaged ammunition left over from WWII. I was with the
Second of the 32nd Field Artillery Battalion. I was stationed at Fort Sill, Oklahoma. We fired all day long 5-6 days per week. Although I did not rotate to Viet Nam, I am sure the frequency of firing in Nam there was far less than at Sill;. Every day, at the end of the day, due to gun smoke bloeint towards us, my brass belt buckle was corroded, and had to be polished in preparation for the next day. We were given no heariing or breathing protection. We usually had a 3/4 ton pick up truck filled to the top of the bed with unused powder to burn at the end of the day on a range road. Now the VA hospital says my IPF and my high pitch hearing loss have nothing to do with my Military service. Too many years ago. My lung doctor just says IPF and does not have the brass to link it to my service. After mustering out, I was a restaurant assistant manager for about 1 year and since I have been an insurance agent for 47 years. I guess inhaling ball pen fluid for so many years caused my problems. Can you suggest anything for me to get assistance from the VA?

I would like to know if there is anyone else in this group with PF caused by AMIODARONE. My husband was diagnosed with PF in 2013. My husband was on Amiodarone for 7+ years with out any testing such as PFT's or HRCT scans. As we search the internet there are very reputable websites that do say that PF can be caused by this heart medication. Before 2013 he was misdiagnosed with COPD which happens alot…being misdiagnosed. My husband is on oxygen 24/7. We do have portable O2 which can go up to 5LPM. For now he is stable but his DLCO keeps going down last PFT the DLCO was 31. Our pulmonologist who treats many PF patients agrees that he got it from the medication. He is going to pulmonary rehab too and uses a nebulizer. Prayers for everyone with this devastating disease…

Welcome to Connect, @rfree1. What condition was your husband taking amiodarone for? A-fib or other heart condition? Are any of the PF symptoms reversible now that he's not taking the medication?

My husband had A-fib and in 2007 he had his 4th ablation at Cleveland Clinic. The cardiologist/electrophysiologist at CC told him in his first appointment that he wanted him off the Amiodarone immediately… he was off for 9 months until he actually had the ablation. The ablation worked because it was done differently then the other ablations. No the symptoms are not reversible and he was pretty much stable for a few years but he was hospitalized in September 2017 and it seems the PF is progressing more. Even though he is off the amiodarone it stays in your body a long time and he was on the med for over 7 years. His original cardiologist who put him on amiodarone in 2005 wrote a letter to his PCP asking him to monitor him for lung toxicity but no one ever tested my husband for anything until he was short of breath and they told him after many tests that he had PF. There are many many articles in medical journals that agree that you can get PF from these meds.