Mike Clifford
Forum Replies Created
-
Great topic and very timely for me personally. I actually went to see my general practitioner (GP) after what seemed like sudden changes in my SOB. They really didn’t come up with anything but did give me an inhaler with steroids and it seemed to help. Interestingly a chest AP and Lateral XRAY was taken and the radiologist mentioned ground glass opacities and other terms we all often see and hear with this disease process. He also mentioned there were an increasing number of infiltrates and they appeared to be pneumonia versus edema. My take after reading the X-ray report was that my IPF is worsening, somewhat gradually but heading the way it does for all of us. Several days after my appointment I got a call from my GP saying an antibiotic was ordered to be taken for 5 days for the pneumonia. I’m in my third day today with little or no change. I have a PFT tomorrow that I’m expecting to have difficulty with and then I see my Pulmonologist a week later. I’m anxious to see how this all plays out. The unfortunate part is that it’s going to take a couple of weeks to perhaps come up with something more definitive or worse there may not be anything more definitive. Good luck to all on this journey.
-
Monica,
Based on discussions I’ve had with my pulmonologist the improvement is likely due to your effort, situation, position, or whatever the last time you had the spirometry. The measurements taken are a more general type measurement as opposed to a specific measurement such as your height. The complete set of measures is more indicative of your status more so than a specific measurements change. It is possible to see legitimate improvements in some or even several measure but it is very unlikely (probably impossible) that the fibrosis is actually improving or getting better. Sorry to offer this interpretation and then again I too am only a patient with the same problem as yours. Hope you do well on your journey and thrive for as long as possible.
Mike
-
I know for a fact that esbriet is contraindicated if you’re on Ofev. I’d imagine it’s the same if you’re on esbriet I.e Ofev would likely be contraindicated.
-
Cecil,
Sorry to hear of your diagnosis. As John said above I’m also not a doctor and believe the progression will be faster without one of the antifibrotics than taking one. We’re all different so who knows how the disease will progress in anyone of us but it will progress. If you’re a gambling person perhaps you’d put off the therapy till you become somewhat symptomatic. If that’s your choice it may not be a bad one but I would be very diligent in my follow up and monitoring of the disease process. The drugs don’t cure the disease but as said there’s a ton of info showing the progression is slowed by them. The side effects aren’t a certainty but I’d think they have a high probability of occurring over time. They can be and are unpleasant but they are also manageable. I’ve been on Ofev for about 25 months and an doing relatively well but I can tell but physically and via test results the disease is progressing but I do believe the therapy is slowing the rate of progression. Good luck to you.
-
Really good question that should be easy to answer but isn’t. I’ve been on OFEV for about 16 and a half months. Had a baseline PFT in June 2019 then a follow up in Dec 20 (started OFEV in Jan 20). There was a very slight decline in most measures. Had another follow up PFT in April 2021. Slight declines continue but rate of decline seem to be increasing. Total Lung Capacity was the most significant decline. Had a follow up CT and though fibrosis is increasing the images which were about 12 months from the comparisons didn’t show too much in terms of increased honeycombing and ground glass opacities. So it seems the OFEV is doing its job. This of course assumes it’d be worse without treatment. There are days now and again where the side affects are unpleasant but thankfully they’re bearable. Being unable to breath would seem to be much worse. I believe the OFEV works and my pulmonologist is certain it does and openly says it and Esbiret are game changers in terms of life span for folks living with this disease. Hope the helps somewhat and encourages your dad and others to try and stick with the meds. Good luck to all.
-
Auriela,
I had a complete work up in the spring of 2019 for shortness of breath on exertion. The work up was mainly cardiac in nature as my family history has a number of cardiac issues. Cardiac was fine but you already know the rest of the story. I’m 68 and in good physical condition. The only pill I take is Ofev. I can still walk a couple of miles on mostly level terrain but throw in a hill and I’ll have trouble. If I go up and down the stairs two to three times my O2 sat drops to the mid seventies but it’ll go right back into the mid nineties if I take it easy for five minutes or less. I’m dealing reasonably well with the IPF and Ofev side affects. As I said before hope you get better news and if not then I hope you do even better than I did and am.
Mike
-
Hi Aurelia,
Got my diagnosis of IPF about a year ago. Had a chest X-ray in the spring that showed interstitial lung disease. A high res CT scan was inconclusive so I had a lung biopsy. It was done using a DaVinci robot and was a breeze. I was out for it but it took all of 10 minutes and there was little to no discomfort. I felt like I could’ve gone home right afterwards but there’s a danger of a lung collapse so I had to stay over night. The chest tube came out before 7 am the next morning and all was fine. The chest tube caused more discomfort than the biopsy. Hope it goes well for you and they find something a little easier to deal with in your case. Good luck
Mike