Mayo Clinic Connect
Is there any one out there that has PF?
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
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My husband tolerated Esbriet very well, minimal side effects. Continued progression of IPF but it may have gone much quicker without Esbriet?
My name is Larry – I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
Hi Terries. You mentioned your husband was DX 2011. What treatment has he been on. I was DX in 14 and on Ofev(1 year) 02 24/7 2lts and swim 3 days a week… It’s important to ex cerise and get the 02 his body needs. How are you? Hang in caregiver he needs a strong you too…..
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
Hello. Yes our lives have changed but we know our devil so to speak…. I understand the resistance to 02 but have decided to feel better than worse. I don’t get to mow my grass but I can sit and pull reeds ( very therapeutic) are you on Ofev? Remember the musical Godspell. Day by day Memorize those words my IPF friend.
Liked by Colleen Young, Connect Director, payntertam
I am taking Perfinidone 6 capsules daily through a research study since 5-25-2016 and it is supposed to slow the progression. It does almost eliminate my cough but it has side effects that can effect some but not all. The biggest one is fatigue.
WOW !! IPF for 16 years. I am interested in knowing what are the acid reflux pills that you take. I take Perfinidone through a research program reluctantly but that is about the only med available.
I just found this very old thread, so I hope someone will still read it.
In 2011, an X-ray after a minor car accident showed I had pulmonary fibrosis. The doctor prescribed Serratide but no other medications.
Having read a lot about it, I decided to try serrapeptase – this is an enzyme that dissolves fibrin. I continued to take it, and after a CT scan last week, today my doctor told me I have no sign of lung fibrosis.
I do have emphysema, so I still have problems, but I was amazed that the fibrosis had gone. Sadly, the doctor showed absolutely no interest in how I achieved this, given that it is supposed to be incurable.
Welcome to Connect @spicegirl. While this thread was started in 2011, members have been contributing to it more recently as well. If you keep reading you’ll meet @nancyligon @pd02 @powderpuf @inspiration @muskiemama and others talking about pulmonary fibrosis.
Is it possible that you were incorrectly diagnosed with PF?
Colleen, I would have to dig out the X-rays and get a second opinion.It was not idiopathic fibrosis, it was probably caused by smoking, if that makes any difference.
I saw a different doctor a couple of years ago who sent me for the first chest X-ray since the accident. He told me the PF had not advanced, which means it was there, but had not progressed. So no, I doubt there was an incorrect diagnosis.
Hello. I was diagnosed ipf 5 yrs ago. when Esbriet became available, in Mar 2015. started 270mg tabs 9 a day received immediate results and breathk tests show improvement from last yr and recently. I use 5 liters pulse O2 full time 24-7 Esbriet has worked well for me Also, I should say, that 16 yrs ago I was diagnosed idiopathic hypersensitive pneumoñitis at Mayo Clinic Scottsdale I believe the ipf evolved from this 10 yrs later and also associated with acid reflux.
Welcome to Connect, @oliver22.
Thank you for sharing your experience on Esbriet. A lot of people seem to agree that the concept of IPF evolved over the last 10 years. You briefly mentioned about acid reflux, would you be able share your experience on acid reflux medications with others too?
hi, i have been on Esbriet 18 months. very pleased with results i also use O2 24-7 some side effects but do-able,recently reduced to 6 caps aday 270mg.breathing test have improved! go for it
I have IPF.
how long since your diagnosis? i have going on five yrs. i posted nov. 2016 some detail
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?
Hi @oliver22, thanks for welcoming new member @loisblo.
Let me introduce you to a few other Connect member who have been talking about pulmonary fibrosis @nancyligon @pd02 @powderpuf @inspiration @muskiemama @chicoco @jvivian @mairi.
Are you on oxygen?
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