Patient Comments: Pulmonary Fibrosis - Treatments


What treatments have been helpful with your pulmonary fibrosis? Submit Your Comment

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!

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.

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.

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.

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!

Comment from: Thomas, 45-54 Female (Caregiver) Published: June 10

Idiopathic pulmonary fibrosis (IPF) killed my mother. A lung biopsy was performed, she never came out of it. Now my wife has all the symptoms, but no one will listen to me about IPF. Why!

Comment from: shoutforjoy, 55-64 Female (Patient) Published: January 19

Breo inhaler has helped a great deal for pulmonary fibrosis. I try breathing exercises daily, since I have a 5 to 10 minute walk to work. But, yesterday I developed a pain under my rib cage and made it hard to breathe.

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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Comment from: 45-54 Female (Caregiver) Published: March 27

My grandfather and father passed away from pulmonary fibrosis. My father had a left lung transplant in September of 2007. They tied off his right lung which was only working 30%. After the lung transplant there were many ups and downs. My dad was on oxygen all the time. He would no longer eat because of all the anti-rejection medication so a peg tube was placed, but by that time he already lost 60 pounds. My father then entered the hospital to have his right lung removed as it was filling with fluid. He never came home from the hospital after that was done. Six months later, on March 11, 2009 my father passed away. He was only 54. This disease is horrible and my father fought it since 2005. This is also scary as it runs in my family. My grandfather passed away in 2005 of the same thing. My thoughts are sent to anyone who has to fight this disease. I hope to see a cure before it is my time to go.

Comment from: rita, 65-74 Female (Caregiver) Published: January 31

I have a friend that her mom went into hospital with pneumonia and they found that she had pulmonary fibrosis. They were 99% sure but did the lung biopsy to confirm, she is still in hospital now on a ventilator. The kidneys are shutting down, not a good outlook. She is not a candidate for lung transplant because she smoked, but before the surgery she said she wanted to live. The doctors said it would have been better to have cancer, at least they could have helped her.

Comment from: Kiera, 55-64 Female (Patient) Published: November 01

After my 3rd pulmonary embolism in 2003, I was diagnosed with pulmonary fibrosis and I just read that people usually die within 5 years. My specialist has me on blood thinners, prednisone and other steroids that I inhale daily. Somehow, he's managed to keep me alive for 10 years.

Comment from: Joleneh63, 65-74 Female (Caregiver) Published: November 08

My dad died from Pulmonary Fibrosis as did his mom; my grandma and his sister; my Aunt so of course I was extremely concerned of this being inherited so I did extensive background on where my grandparents lived which was on a huge farm in North Dakota and my dad was the youngest of 6, he was born in 1922. I learned form a Dr. at the University of North Dakota that during the 20's and 30's that a pesticide was used on the crops, it was called Paraquat and this pesticide has now been found to be another known cause of PF with having 3 immediate family members having PF and dying at a relatively young age; my grandma was 76, my Aunt was 68 and my dad was 67. I was relieved to learn that it's not inherited but PF is a horrible painful way to die and watching my dad at my young age of 27 was unbearable!! He died in 1990, I am now 48 years old and there isn't a day that I don't think about him. I wish there would be a cure for this terrible disease because my dad missed out on watching my daughter grow into a very beautiful young women and now a mom of 2, he's missing out on his great grandchildren and he would only be 89! Terrible disease.

Comment from: marcough, 55-64 Female (Patient) Published: October 22

I have a great pulmonary doctor. He put me on a drug called Actimmune. I was on it quite a while, but I believe it stopped the progression of the disease. It is an injectable drug three times per week. When I was diagnosed, I thought I had about four years to live. It has been 10 years since I have been diagnosed with pulmonary fibrosis. I still have fatigue and shortness of breath. I just take it easy when I feel tired.

Comment from: M Kay, 55-64 Female (Patient) Published: July 08

I had necrotizing pneumonia with MRSA, was unable to be ventilated at first, and placed on ECMO (extracorporeal membrane oxygenation) for 5 weeks and only received PEEP (positive end-expiratory pressure) through my trachea. After ECMO my lungs healed enough to be ventilated and I was on the ventilator for 7 more weeks. The only treatment I receive is oxygen at 2 liters. I turned 60 while in the hospital. I was working full time and in good health. Now I am applying for disability due to my shortness of breath not allowing me to continue working.

Comment from: nuerology sue, Female (Patient) Published: May 13

I have not received any treatment because of my neurological disorder. I am afraid that I won’t get treatment until I get really sick. I can't believe this is happening to me. I’ve been getting electromyography (EMG) and nerve conduction tests for about four years with no answers. Now I have fibrotic interstitial pneumonia that my pulmonologist isn't sure how to treat because of my muscle weakness. No matter what happens, it feels good to write about it. Thanks for letting me share how I feel.

Comment from: ylansing, 55-64 Female (Patient) Published: March 29

Three months ago, I was diagnosed with pulmonary fibrosis, secondary to rheumatoid arthritis. It was found after a bout of pneumonia that left me hospitalized for eight days. I was prescribed what seemed like massive doses of prednisone to reduce the inflammation in my lungs. I lost about 20% of my lung function. I still get shortness of breath with even a short walk. I've learned to walk slower and pace myself with my activities. I have to sleep with oxygen. Otherwise, I'm reasonably healthy. I'm trying to learn as much as I can so I can plan the rest of my life. Recently, I retired because my job was very stressful and I just don't have the energy to carry out the duties of my position. Needless to say, I'm scared.


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Comment from: Mare, 75 or over Female (Caregiver) Published: January 03

My mother died from this disease at the age of 84, this is a horrible disease. She lasted 3 years with it, her last year of course was the worst. Her doctor had prescribed a daily dose of predisone and thus this caused her to have diabetes, which she never had before. She was also on oxygen. We're still not sure what the cause of this is to this day. The woman never smoked a day in her life, she was a very healthy woman. This disease robbed her of her dignity.

Comment from: sandie, 55-64 Female (Patient) Published: March 02

I have just been diagnosed with Methotrexate-induced pulmonary fibrosis. After a two-week stay in the hospital, I’m home with oxygen. I’m still coughing badly, breathless and my chest pain is ongoing. I had a heart attack three months ago. I’m 62, female, and no longer working. I have lost 36 pounds in the last month as my coughing causes me to vomit non-stop! I’m so tired. My blood pressure has always been high; now it averages at 193/88.

Comment from: Ken, 75 or over Male (Patient) Published: February 08

I was diagnosed by biopsy with Idiopathic Pulmonary Fibrosis in Jan. 2006. My Doctor prescribed actimmune and my breathing tests and chest x-rays have not shown a change since the first ones. I have not have any of the dreaded side effects of the drug and feel blessed to be here. My blood/oxygen is 95% and my main symptom is shortness of breath if I push myself too hard, when this occurs, I just rest. I am 76 years old and still very active.

Comment from: Pat, 75 or over Male (Patient) Published: January 21

Even though I had no GI symptoms, I treated myself aggressively assuming that reflux with aspiration of stomach acid was the cause. This included not just the usual dietary changes and acid blocking medications. I also elevated the head of my bed six inches and slept on my left side rather than on my right side. My disease was progressing rapidly before I made these changes. There has been no sign of any further progression over the past 18 months. My last four pulmonary function tests were unchanged from baseline. I think that the fibrotic scarring in my lungs is due to chronic reflux and aspiration.