I first was diagnosed with pulmonary hypertension and in trying to find out what was causing that, they found it was IPF, So about 4 years since the beginning. Are you on oxygen yet?
I was diagnosed with IPF 16 years ago. Since then I have only been taking acid reflux pills (2) per day. I work out in a gym 3 times/week and don't seem to lose my breath. When walking, I do. My doctor advises that I should take Esbriet but I am reluctant. My heart is strong and I sleep 7-8 hrs./night. I am at an impass as to what to do. I am 76. My symptoms increased slightly in 2013
Hi @sophiasmom,
Let me be the first to welcome you to the pulmonary fibrosis group. I read in another message that you were diagnosed about 2 years ago. Can you tell us a bit more about yourself? What symptoms along with coughing do you find the most challenging? Are you on oxygen?
I was diagnosed with IPF 16 years ago. Since then I have only been taking acid reflux pills (2) per day. I work out in a gym 3 times/week and don't seem to lose my breath. When walking, I do. My doctor advises that I should take Esbriet but I am reluctant. My heart is strong and I sleep 7-8 hrs./night. I am at an impass as to what to do. I am 76. My symptoms increased slightly in 2013
Hi Coĺeen, i have trouble with walking any distance,have trouble losing my breath. The tiredness really gets to me. I am not on oxygen yet. My levels drop into the high eighties when i make my bed or run a vaccum etc. If i rest they come right back up to 95 or 96. I' m 65 yrs old and live in Florida. I will be flying next week to N.H. and I'm a little nervous about oxygen level. I haven't flown since i was diagnosed.
I was diagnosed with IPF 16 years ago. Since then I have only been taking acid reflux pills (2) per day. I work out in a gym 3 times/week and don't seem to lose my breath. When walking, I do. My doctor advises that I should take Esbriet but I am reluctant. My heart is strong and I sleep 7-8 hrs./night. I am at an impass as to what to do. I am 76. My symptoms increased slightly in 2013
Airplanes are pressurized to around 8000 ft. not sea level. Be sure your doctor knows you are flying. The air lines are really strict with people flying with oxygen equipment.
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
My pulmonary dr. prescribed a Z-Pak which worked great for the severe sinus infection I had.
Are you on oxygen at all? Your primary dr can prescribe med for you too. Hope you feel better soon -
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
Hi Tula:
I was also prescribed lots of ZPac
I eventually discovered it simply was not working!
I did research and read where zPac perhaps is not for everything.
A pulmonary appointment is what I answered my questions about my symptoms. Have you seen a Pulmonologist?
I'm so happy you found Connect!
Lindsy- mentor
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
I found ZPak did work that time but a Prednisone regimen in May of this year helped immensely and I am on a maintenance dose of 10 msg daily. My chest still gets tight & I have a croup like cough right now. Nothing has changed as far as meds get recently.
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
Actually, I have two pulmonologists on my team and I have a referral to go to Ann Arbor U o M to get an opinion from a larger group of experts. Info is about I have now because, as you know treatment for IPF is scarce, Esbriet side effect r too much for me & age precludes any transplant option. I'm thankful for this site and all the good people who r generous w/ Info.
Yes! I have IPF, was diagnosed about 5 years ago by my pulmonary doctor as COPD but a second opinion by Cleveland Clinic dIagnosed it as IPF. At present, I've been taking enzymes as prescribed by Pivital Health in Arizona. The pill regime has reduced the coughing and mucus considerably. Still have shortness of breath after little exertion. Doesn't cure but helps until something better is developed!
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Not yet,thang goodnes. My last exam the tech told me my levels have gone down.
Hi @sophiasmom,
Let me be the first to welcome you to the pulmonary fibrosis group. I read in another message that you were diagnosed about 2 years ago. Can you tell us a bit more about yourself? What symptoms along with coughing do you find the most challenging? Are you on oxygen?
Hi Coĺeen, i have trouble with walking any distance,have trouble losing my breath. The tiredness really gets to me. I am not on oxygen yet. My levels drop into the high eighties when i make my bed or run a vaccum etc. If i rest they come right back up to 95 or 96. I' m 65 yrs old and live in Florida. I will be flying next week to N.H. and I'm a little nervous about oxygen level. I haven't flown since i was diagnosed.
Airplanes are pressurized to around 8000 ft. not sea level. Be sure your doctor knows you are flying. The air lines are really strict with people flying with oxygen equipment.
My pulmonary dr. prescribed a Z-Pak which worked great for the severe sinus infection I had.
Are you on oxygen at all? Your primary dr can prescribe med for you too. Hope you feel better soon -
Hi Tula:
I was also prescribed lots of ZPac
I eventually discovered it simply was not working!
I did research and read where zPac perhaps is not for everything.
A pulmonary appointment is what I answered my questions about my symptoms. Have you seen a Pulmonologist?
I'm so happy you found Connect!
Lindsy- mentor
I found ZPak did work that time but a Prednisone regimen in May of this year helped immensely and I am on a maintenance dose of 10 msg daily. My chest still gets tight & I have a croup like cough right now. Nothing has changed as far as meds get recently.
Actually, I have two pulmonologists on my team and I have a referral to go to Ann Arbor U o M to get an opinion from a larger group of experts. Info is about I have now because, as you know treatment for IPF is scarce, Esbriet side effect r too much for me & age precludes any transplant option. I'm thankful for this site and all the good people who r generous w/ Info.
Where are the rest of the comments? I posted a reply to steve some time in the last week,(July 2017) but it has disappeared!
Yes! I have IPF, was diagnosed about 5 years ago by my pulmonary doctor as COPD but a second opinion by Cleveland Clinic dIagnosed it as IPF. At present, I've been taking enzymes as prescribed by Pivital Health in Arizona. The pill regime has reduced the coughing and mucus considerably. Still have shortness of breath after little exertion. Doesn't cure but helps until something better is developed!
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