Patient Comments: Pulmonary Fibrosis - Treatments

What treatments have been helpful with your pulmonary fibrosis?

Comment from: Linda, 65-74 Female (Patient) Published: September 29

I have polymyositis, been also diagnosed with pulmonary fibrosis, and I'm on oxygen at this time. I'm on prednisone, a very high dose! I'm taking a shot three times a week plus I'm to go in once a month to the hospital to give my immune system a boost of new cells. I have to say if I received the help when I was in my thirties things might have been different. I've been fighting depression and don't know how to bring myself out of it. I am also in a wheel chair most of the time, so finding things to do is limited. I try every day to have a smile on my face, but it's hard! I getting counseling soon!

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Comment from: Renee, 55-64 Female (Patient) Published: July 09

I was diagnosed with polymyositis in 2002 and idiopathic pulmonary fibrosis (IPF) by a lung biopsy in 2007. I have been on prednisone at various dosages from the beginning along with various immune suppressant medications. I began taking tacrolimus in 2008 and have held off any progression of more scarring. I have shortness of breath and coughing. I am relatively active but I have learned to pace myself. I have the best medical team that all work together.

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Comment from: dondee60p, 65-74 Female (Patient) Published: June 20

I was diagnosed with pulmonary fibrosis (PF) in 2002. I have had pneumonia many times, caused by severe GERD. The doctor did a Nissen fundoplication which kept me from aspirating into my lungs. I take prednisone 10 mg daily, more if sick. I also take NAC (N-acetyl cysteine), 600 mg 3 times/day. I have been stable for several years and only need to see my pulmonologist once a year, or if necessary. My pulmonologist told me he doubted I would die from PF as another disease would take me first. That made me very happy! I do continue to hope for others with IPF or PF that there will be a cure soon.

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Comment from: Fastforwardmd, 65-74 Male (Patient) Published: May 30

I was diagnosed with usual interstitial pneumonia (UIP) 2.5 years ago but was suffering the symptoms for three years before that. My dad had it too but the doctors did not pay attention because he was suffering from throat cancer and he was in his late 80s. The last 13 years of his life I lived with him. Our house was near a creek and therefore there were many run-ins with rats, rat feces and urine. I am personally convinced that it was this contact that caused our pulmonary fibrosis. I am up to 10 liters when I move around on my oxygen concentrator but I can sleep with it set at 7 liters. They say I will probably contract pneumonia and will die from that. I have installed 2 HEPA filters in my apartment and they are keeping me from catching pneumonia. I took prednisone for thirty days and that rid me of my arthritis symptoms but did nothing but make me susceptible to pneumonia. I don"t take any pills now for 2.5 years. I don"t want to be a guinea pig suffering side effects. I have no idea how I am going to die. Aim confined to the apartment and my oxygen concentrator.

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Comment from: DeeDee, 55-64 Female (Patient) Published: January 06

I was diagnosed in 2011 with polymyositis. I also have rheumatoid arthritis and pulmonary fibrosis. I was diagnosed in May of 2013 with the fibrosis. I was put on high doses of prednisone and methotrexate in 2011. In December 2013 I was hospitalized for 11 days with pneumonia. I am now on oxygen 24/7 and the bottom lobes of my lungs are destroyed! I have no idea how long I have to live but I am going for a stem cell procedure. They have had 70-75% success rate! This gives me great hope it will slow the progression!

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Comment from: Chill, 35-44 Female (Caregiver) Published: August 20

My mother was diagnosed with pulmonary fibrosis in 2010, was told to quit smoking and she did. October 2014 she had a cough and finally in February 2014 she went to the emergency room when she was coughing up blood. She never told me and kept this a secret for some reason. Mom took leave from work and at home she was already on 5 liters of oxygen. In the hospital she just kept getting worse, she was up to 15 Liters of oxygen. Hospital suggested hospice but I couldn't give up, we had to try rehabilitation. She did rehab and we thought we were making progress but she ended up back at hospital at 15 liters again. While in hospital doctor stated there is nothing more medically they could do for her and it was heartbreaking but we did hospice. She passed away on July 14, 2014. Just a suggestion; if you have this disease please tell your loved ones so they can understand what's going on with your body. This is one of the worse feelings to have my mom pass away and I didn't know from what until it was too late. My heart still aches, I wish I knew this 5 years ago, when she was first diagnosed.

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Pulmonary Fibrosis - Experience Question: If known, what was the cause of your pulmonary fibrosis? Please share your experience.
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Pulmonary Fibrosis - Cause Question: If known, what caused your pulmonary fibrosis?

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