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Pulmonary Fibrosis

Also known as Alveolitis, Cryptogenic Fibrosing Alveolitis , Extrinsic Allergic Alveolitis , Fibrosing Alveolitis, Idiopathic Pulmonary Fibrosis, Pneumonitis

All discussions in this group

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  • My father was diagnosed, but meds haven't help at all?

    My father was diagnosed about 4 weeks ago. In that time he has gone extremely downhill. He has been coughing for over 10 years. They told him he was 85% FVC predicted. He is currently on Sulfamethoxazole for infection, prednisone, and pirfenidone to slow the scarring. They also gave him a rescue …

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  • Diagnosed 2 days ago

    I am living abroad and have been diagnosed with emphysema and pulmonary fibrosis, on Prednisolone but at the end of August I will be put on a treatment where I cannot go out in the sun, any one else on this, I don't yet know the name of the treatment  

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  • PPFE

    Hi All, I am recently diagnosed with PPFE in Australia. I was told that 60% of my lung capacity is already reduced and I may need a transplant in next 5 years. Doctors believe it could be due to some autoimmune condition - exact autoimmune disease currently they are not sure about. It all started …

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  • PPFE

    Has anyone been diagnosed with pleuroparnchymal fibroelastosis (PPFE). Pulmonologist and radiologist think I might have it. Not much written on it - fairly new to the medical community, I believe. Prognosis doesn't sound good. Thank you. Sherry (USA)

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  • ILD (Interstitial Lung Disease)

    Good Afternoon, l will try and keep a long story as short as possible. My grandfather for over 5 years has had a prolonged dry cough and breathing difficulties. No one done anything despite his lung function being 40% in 2014. This year he was rereferred to a Thoracic Consultant who mentioned …

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  • open lung biopsy

    Thanks for your replies concerning lung biopsy recommendation.  I was not clear in my statement:  I have been diagnosed with pulmonary fibrosis.  My pulmonologist says there are as many as 200 different kinds.  He claims an open biopsy will tell him how to treat me.  From …

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  • New diagnosis

    I have been getting increasingly breathless over past 6 months. I attended my gp 4 weeks ago and she organised a breathing test. The upshot of this is it has shown i have a restrictive lung problem . I am awaiting an appointment at respiratory clinic . My father died from pulmonary fibrosis 5yrs …

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  • Have a question about Fibrosis in the lung.

    I have mild Copd with mild asthma. I was to 14 mths ago. Went to see a new dr. Did a cat scan and said I have a little Fibrosis in my lung with calcium deposit in my heart valves. He put me on Lipitor 20 mg. I asked about the fibrosis because i have aspirayed with reflux. He didnt seem …

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  • Cellcept

    This what my pulmonist told me yesterday. IPF is an autoamume disease which is what this drug treats. The doctor said it had less side effects than predisone. I was told it was being considered. It is not prescribed yet. This came from doctor highly recommended by IPF foundation. Thanks …

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  • Uh oh, I googled

    My mum (62) has had some trouble with breathlessness for about 4 months now. Initially she was told she had adult onset asthma and given inhalers. They didn't work so they tried a different inhaler. Again, no luck so she was prescribed a 2 week course of high dose steroids. Again, no relief. …

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  • Lung expension

    I had a lung surgery of emphyma and after surgery my xray showing the blunting .i want my lung extend till the end point of diaphram.plz suggest wht to do?

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  • IPF - are there any inhalers that help?

    My mum is 88 and was diagnosed with IPF about 3 yrs ago. This past year she seems to have got progressively worse. At the moment she is on both Prednisone and Amoxycillin as she has had a lung infection. The dr gave her a ventolin inhaler to see if that helped but it hasn't made much …

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  • Pulmonary Fibrosis

    My name is Teresa. I have just been told that I have P.F. I am only 47 and have a 5 year old son. They say I have had it for the past 5 years. So my time is running out. I'm so scared and the thought of my son growing up with out me is killing me inside. I'm just looking for some support as …

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  • Here's my experience since Feb of 2011

    I'm still fairly active although I've been in hospice since the first of December. I haven't taken any medications to treat my IPF although I did start taking  medofinil for fatigue right after the biopsy confirmed the IPF.  I believe that exercise is the key to my longevity.&# …

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  • Because of the Holidays

    I have not told My Family what is going on. I feel it best. Have not seen Dr yet for a plan on whats next for me, This was my first CT so I read the results my self, It shows PF & a few small noduals 4mm. I have COPD & a racing heart hardining of the arteries & alot more, Just wondering …

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  • I'm confused Now !!

    Hi everyone, I have been waiting to hear from my Dr since I had a Low dose Cancer screening CT on the 8th of this mo. I decided to call his office today. I asked that he take a look & wondered if he wants to see me. The receptionest called back & said he review the report & said.I had a …

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  • Is there a Dif

    Hi Everyone, I saw my heart Dr. yesterday, He said PF is dif than fibrosis in the lower lungs . Can that be true ?? Still waiting to lab this I guess. ALL OPINIONS WELCOME  Thank you everyone, STILL wondering .. Best wishes & Happy New Year //  

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  • Hello Everyone,

    Still have not seen my Pulm Dr. I am seeing him this coming week, I have not been feeling so great, But wanted to check in with you all. Hoping to get some real answers . Have a Nice weekend... Best to everyone,, Nancy

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  • Travel to Las Vegas

    Hi, have PF, and have been offered a free trip for a week to Las Vegas staying at the Venetian.  Would like to travel while I can but is Vegas a smart place to go because of the very relaxed indoor smoking laws?  Any advice would be appreciated.

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  • Ipf and lung transplant.

    My husband was diagnosed with iPF 2 years ago and his lung function recently declined. Has anyone had a lung transplant for IPF and if so how did it work out?

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  • ESBRIET

    Has anyone with IPF had bad depression on Esbriet? I had to discontinue Ofev & have been on Esbriet for 3 months. The depression is terrible and so I had to lower the dose! This worrries me. Anyone else have this problem? God Bless You All!

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  • Pulmonary Fibriosis

    Hi All, I had shortness of breadth and dry cough and visited a pulmonologist. Took a syprometry and CT SCAN based on his suggestion and syprometry test came clean and the CT SCAN was also fine except for the mention of "Fibrotic bands in lower lobe and lingula" I'm totally worried …

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  • Recently diagnosed with IPF

    My father has been diagnosed with ipf and seen a lung doctor. His lung doctor said they can't do anything else and referred him to mayo clinic. Mayo clinic would t take him because we are out of state and they won't bill out of state insurance. We live in southeast Kentucky and are 14 hours …

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  • How do you get diagnosed with IPF?

    Hi, I am a 25yo girl. A week ago, I started having cough with very thick phlegm that's hard to expel and also shortness of breath. I went to the ER and they had me done the chest x-Ray and they said they saw bronchiectasis in both my lungs and asked me to see a lung specialist. And so I did. …

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  • Tina Street

    I was diagnosed with ipf 6 years ago and I want to know if anyone can enlighten me to the symptoms of the end stages im on no medication and have been through numerous chest infections fatigue depression the whole works really but of late cant seem to shake infections off and coughing has fractured …

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  • Pulmonary Fibrosis

    Hi I was diagnosed with pulmonary fibrosis 2 years ago but have had the symptoms I feel for longer. I have recently had a lung xray due to poor health which revealed that my fibrosis had got worse, apparently there is a new medication that can only be prescribed by a doctor from the local …

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  • this horrible disease

    This is a horrible, debilitating, excruciating illness to have to go through.  I watched a loved one suffer and eventually end life because there is no cure or no hope...everything that they do is only temporary.........there are so many complications with this disease that it is really …

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  • What's going to happen to me?

    I live in the Monterey Bay in California, so hope I can crash in on the UK folk here. It seems like a nice group. I was diagnosed with IPF around July of 2016. I am 67 years old. My condition went from no symptoms to a horrible crash after a lung biopsy, and a kind of recovery but with the …

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  • Cellcept for IPF

    Has a doctor prescribed cellcept for any one? If so what is the result. I have IPF but not take any medicine for it. Doctor suggested cellcept yesterday. Thanks for your reply. Cooper

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  • Piriton while on Xarelto

    I suffer from severe eczema and wanted to know if taking piriton or other antithessmines is ok while on thinners. Am breaking out and not sleeping well.itchibg and bad blisters.any advice will b appreciated

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