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CPFE
I was initially diagnosed with pulmonary fibrosis and one year later CPFE (combined pulmonary fibrosis with emphysema). I’m interested to know how many other people have this combination. My pulmonologist says it falls in the rare disease category. It seems like most of the people on this site have very similar experiences except the mortality rate of CPFE is more severe.
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6 Replies
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I was diagnosed with both as well about 1 year ago. My doctor gave me 2 inhalers for the emphysema . I don’t think they help much. I am not on medication for pulmonary fibrosis as of yet but I wish I was. From what I understand the sooner you get on the medication for PF the better you chances are to slowing down the symptoms.
Take Care
Jeff
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Where do you live.Jeff, and why are you not on treatment for your PF? It can have nasty side effects but if it slows the progress of the disease and you can tolerate them or indeed don’t get them, if you can get it prescribed, it is worth trying it as soon as possible.
Having said that, I live in the UK and prior to a change in the NICE guidance rules, if you had the Idiopathic version of PF, they made you wait till your disease had progressed to a certain level before prescribing the treatment. I started to have symptoms shortly after my husband’s death in Nov. 2016, but was only started on a low dose of Nintedanib (Ofev) this March, by which time my disease had progressed beyond the old level and I have got a lot worse since then and can no longer do the things I used to do quite easily a year ago and there is no way of putting the clock back till research proves otherwise. I haven’t suffered much from side effects but the treatment hasn’t benefitted me and I think that this is because it was started much too late. I had already lost appetite and consequently also a lot of weight well before starting the medication
I realise that treatment options may be difference with your combined disease, which Is why I asked the question and should be very interested in your answer. I wish you the best of luck in any event.
Bouleversee
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I was diagnosed with IPF 10/2020. 2years later diagnosed Worth CPFE I am 81 years now and on 2 1/2 L and 4 L when i work put. I choose not to go on any of the medicines. I Walk 1 1/2 Miles Daily at a 20 min mile. I do weight training of some sort Daily. I eat pretty healthy most of the time plenty of fruits on vegetables Only other thing I do is different breathing exercises both morning and evening total of about 45 min. I will be getting another scan in about 3 months this will be my 4th year of diagnosed. My breathing was at 110% volume of anyone my age. They were shocked. I have to avoid extreme heat and cold I do have a hard time breathing in real hot or cold air. I seem to be able to do most things but needs more rest between activities .. I have no trouble walking 30 mins without stopping but I don’t try and push myself.
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I was diagnosed with CPFE about three years ago. For the past year I’ve been on 6-7L. of O2. I thought I was ready to die last fall, but I’m still here at 77. I was on both therapies for about a year each, but my test numbers kept falling so I quit on doctor’s advice. My last O2 test was a year ago and my DLCO was 31%. I was put in home hospice but released when I hadn’t died after six months! I’m basically homebound these days.
Blessings to all.
Tom
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So far there have been no new significant changes since my last visit. I am still on Trelegy 200 mg per day, oxygen o4 lpm. 24/7. Thank you for all of your responses.
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I need to add my doctor has recommended OFEV on my last two visits. I have chosen not to take that route for a few reasons. The first being, the multiple side effects and second my insurance doesn’t cover it.
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