Denis Ryan
Forum Replies Created
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Hi Janet, I thought you w
were describing me there in your letter. I have IPF since early 2019. Am on 100 mg OFEV twice daily but little or no side effects. Lost 140 lbs over 2 years. Food a battle, no appetite, try to eat 5 small snacks daily including food supplements such as Fortisip. Receiving hospital dietitions advice but still not putting on any weight. Not sure where I go from here but tired of trying to force myself to eat. Any suggestions? Denis -
Hi Everyone,
I recently attended a Zoom conference on Lung Fibrosis here in Ireland. On session was given by a consultant from the University of Essex in the U.K. I asked her “Can Reflux/GERD be a cause of IPF”. She responded –
“This has been the cause of much discussion – it is generally thought that GERD exacerbates rather than causes IPF but there are a few cases where the fibrosis is unilateral (affecting one lung) in individuals with severe untreated GERD where the GERD is thought to be a probable cause”. It seems to me that there is still confusion about the question and more research needs to be undertaken on this issue! It would be interesting to hear what your own consultants think about it. Denis Ryan -
Hi All,
I am somewhat confused.
I am a user of OFEV for IPF with 100 mg capsules twice daily. I was reading the Boehringer Ingelheim package leaflet that comes with the capsules and I noticed that under the item 1, the phrase “OFEV helps to reduce scarring and stiffening of the lungs”, mentioned under the heading “What OFEV is and what it is used for”.
This statement seems at odds with what my lung consultant advises as his opinion is that OFEV cannot reduce the scarring but instead, at best, only stabilises the growth of this IPF lung disease, as it is medically accepted as a terminal disease.
Surely, Boehringer have a duty to patients to amend the above phrase in their leaflet to reflect the true, correct and honest position?
Your views and opinions would be most welcome. -
Hi Don, I was diagnosed with IPF (via X-Ray and CT scan) in early 2019. I take 100 mg X2 daily of OFEV and can tolerate it fairly well. I’m not on oxygen. My Consultant says I am stable currently re. FVC and DLCO. Last night thinking about this disease, I felt I should find out what are classed as reasonable ranges for measuring both the FVC and DLCO as my Consultant is not too forthcoming with information. Many thanks for any suggestions re. the ranges.
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Thanks Christie for clarifying the question of the 2 years for me. I’m still learning about this terrible disease.
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@christie-patient
Hi Christie, I have the IPF for 3 years now. I’m 80 years old. My consultant tells me (Dublin, Ireland) that I will not get a place on the transplant listing as I am over 70 years of age (maybe due to lack of donors). I am in good health & taking Ofev @ 100 mgs twice per day and have little of the side affects of same. I take rehab. exercises 3 times a week (via online) and walk around my neighbourhood the other days of the week and that seems to suit me. I was listening to a top consultant here in Dublin recently (Zoom) and she stated that 50% of transplants survive the 5 years mark which seems a little better than your mention of 2 years. I suppose a lot depends on the individual/patient/age etc. I find this website excellent for the variety of questions and the many suggestions that contributors provide. Keep up the good work. Denis