@westds01
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Robert B replied to the topic Using supplemental oxygen in the forum Diagnosis Information and General Questions 2 months, 3 weeks ago
I’ve been on liquid oxygen for 20 years. They don’t use it much anymore but I’m on 3L and do really good. I’ve slowed my pace but still play golf a couple days a week. I couldn’t do much of anything when I first starting using oxygen. My overall health improved dramatically. I was reluctant using it all the time but when I realized that I not onl…[Read more]
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Robert B replied to the topic Life span in the forum Diagnosis Information and General Questions 2 months, 4 weeks ago
I was diagnosed with IPF in 2003, probably had it longer. I was concerned about the 3-5 years. I went to Mayo to find out. I was diagnosed with another lung disease in 1973 that probably caused IPF ( not sure) but it meant that IPF was not the primary diagnosis. I had problems breathing for about 5 years, but finally starting using oxygen in 2003.…[Read more]
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Robert B replied to the topic Prednisone in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 1 week ago
Until 2 years ago, I coughed all the time and got regular lung infections. The pulmonologist said I shouldn’t have to get sick all the time. I started 10 mg of prednisone daily and 250 mg of Azithromicin 3 days a week. I’m still on 3 liters of oxygen and Tellegra daily, but I don’t cough very much and haven’t had a lung infection in 2 years.…[Read more]
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Robert B replied to the topic IPF stages in the forum Living with Pulmonary Fibrosis: 50+ 1 year ago
Randy, I’m only on 3 but I coughed all the time and had 7 lung infections in a year. My pulmonologist decided to try me on 10 mg of prednisone daily and 250 mg of Azitromiacin (?) three days a week. It has been almost two years and I’ve not had an infection nor do I cough all the time. I rarely cough. I even got by after having Covid. It cha…[Read more]
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Robert B replied to the topic Coping in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago
I was diagnosed with IPF in early 2000’s. I’ve been on oxygen for 19 years. Two years ago, my pulmonologist prescribed Trelegy as a once a day inhaler, and azitromiasim (?) three days a week and prednisone (steroid) once a day. Before these I coughed all the time and had several lung infections. I’m on 3 liters and function well most of the time.…[Read more]
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Robert B replied to the topic The Harsh Realities of Lung Transplantation in the forum Pre/Post Lung Transplant 1 year, 4 months ago
I was looking at double lung transplant but due to Covid they were reluctant to push it through. Although, I was vaccinated, I ended up with Covid. Then shingles, and now gastroparesis. I can’t even process food.
I’m no longer considering a transplant. I’m doing ok on 3 liters of oxygen and don’t need more problems. -
Robert B replied to the topic Just started on Prednisone. Would love to hear how predisone had helped you orno in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 4 months ago
I’ve been taking 10 mg of prednisone for two years. I coughed every day for many years. I also take aurithromiasyn (?) 250 mg m-w-f. The two together have improved my breathing tremendously. Years ago I was on very large doses and gained 45 pounds in two months. I quit taking it but it might have saved my life. Bobby
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Robert B replied to the topic How does taking Prednisone help IPF patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago
I took prednisone in 1973 and gained 45 pounds in two months. I quit taking it but it helped my lungs. Years later, it was used as a rescue drug when I got an infection. I’ve been on oxygen for 19 years. I coughed all the time until two years ago when the pulmonologist put me on 10 mg daily send an antibiotic three times a week. I lost my cough a…[Read more]
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Robert B replied to the topic The IPF Patient's Experience with Prednisone in the forum Diagnosis Information and General Questions 1 year, 11 months ago
Prednisone, my first experience was in 1973 when I was diagnosed with hystiocytosis. I was put on 60mg. After one month and 25 lbs. I wouldn’t Continue to take it. 40 lbs. by the time I was weaned but looking back, it may have saved me from more damage. In 2003 I started on oxygen and was diagnosed with IPF. I coughed a lot and had lots of lu…[Read more]
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Robert B replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 2 months ago
In the 1990’s I wasn’t getting enough oxygen and it caused my blood to thicken. I had to have a phlebotomy every 2 months for over 5 years. My blood was so thick, it was hard to function because I had no energy and my head hurt really bad. In 2003, a new doctor prescribed supplemental oxygen. I started at 2 lt and then went to 3 a few years lat…[Read more]
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Robert B replied to the topic The IPF Patient's Experience with Prednisone in the forum Diagnosis Information and General Questions 2 years, 11 months ago
Mark, that is exactly the kind of story i wanted to hear while making a decision. My health has gone up and down, mostly down. It would really be great to know what normal feels like. Thanks for your note. Bobby
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Robert B posted a new activity comment 2 years, 11 months ago
No, it is arithromiacin 250 mg. M-W-F, and Prednisone 7 days 10 mg. I also take Trelogy inhaler daily in place of Advair and Spiriva. The doctor talked to me about thre fibrosis medicine recently but said there were serious side effects. I’m doing really good on what I’m taking now. It is the first time in 20 years I’m not coughing all the…[Read more]
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Robert B replied to the topic The IPF Patient's Experience with Prednisone in the forum Diagnosis Information and General Questions 2 years, 11 months ago
In 1973 i had a lung biopsy and was diagnosed with histiocytosis X. Then, later with IPF. Immediately, i was put on 60 mg. of Prednisone but quit after 2 months and gaining 45 pounds. Obviously, it helped to stop the degression in my lungs. On and off i had infections and bronchitis. Several years later, as i was having regular lung infections…[Read more]
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Robert B replied to the topic COVID-19 and Lung Disease in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 3 years, 1 month ago
I am diagnosed with Interstitial Pulmonary fibrosis. What is the difference between this and Idiopathic Pulmonary fibrosis?
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Robert B replied to the topic Use of medications bought from other countries in the forum Ofev (Nintedanib) 3 years, 1 month ago
For a few years Spiriva and Advair cost me so much I looked for a solution. I found a Canadian Pharmacy (directdiscount drugs)? and it cost me several hundred dollars less, without insurance, than with Medicare. They came in name brands or generic. They were from India. I never once had a problem with them. I had to order 4 weeks in adva…[Read more]
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Robert B posted a new activity comment 3 years, 1 month ago
Thank you
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Robert B posted an update 3 years, 1 month ago
@charlene-marshall I really appreciated what you wrote about finding some good things during this hard time of isolation. I identified with many of them. I’m walking my dog everyday which I always refused to do because I was always tired but it didn’t keep me from running around. I’ve had to slow down, which has helped me focus on taking better…[Read more]
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Robert B and
Charlene Marshall are now friends 3 years, 1 month ago
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Robert B became a registered member 3 years, 1 month ago
Hi @westds01, Robert, thanks so much for your note and kind words! Although it can be tough to focus on the positive and look for good things amid this pandemic, I believe it is so necessary. Learning to slow down and focus on caring for ourselves a little more intently is so important and like you, a lesson I am learning during this tough time as…[Read more]