Adele Friedman
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My husband used to work in clinical research for this company, which is privately owned by a German family. He worked in cardiac, not pulmonary, drugs. This drug sounds promising. It should be noted it is for IPF patients, not those whose PF has an identifiable cause, such as my autoimmune disease. Mine is Sjogren’s Syndrome, but other autoimmune diseases and other identifiable causes for PF may lead doctors to try different treatments. Of course, doctors can and do prescribe for “off label” indications if they feel a patient would benefit. I just want to point out, this drug is–for now, at least–only for IPF.
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FVC is a component of PFT and a relatively small change from one to the next is usually not cause for concern. It’s the trend over time. ILD or not, EVERYONE loses lung capacity as we age. Also PFTs are a snapshot of one day, and many factors can affect performance on one PFT. Good wishes.
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You may have heard of Noah Greenspan of the Cardiopulmonary Wellness Center in NYC. He is always saying breathing is multifactorial. PFTs provide a good snapshot, and are good for tracking trends over time. But any given PFT can be on a “good” day and another, on a “bad” day. So worry about the trend over time. As another poster said, xray is not a good way to monitor PF progression, whatever its cause. Other variable factors: weight gain/loss, high carb or bigger meal shortly before testing, altitude, overall physical condition (becoming less active, which is easy to do) may contribute to decline, among many other “multifactorials”.
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Pre-arrange for wheelchair transport from and to all gates and leaving airport. I had a HAST test (high altitude simulation) which showed I don’t need oxygen at normal pressurization of planes, equivalent to being at 6 to 8000 feet above sea level. That’s if stationary, sitting. If you use oxygen overnight, pre-arrange with your oxygen supplier to provide it at your destination and tanks if you need them for activity.
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Mycophenolate reduces inflammation and prevents new inflammation from forming. Ofev is to slow the progression of fibrosis. If inflammation remains unchecked, Ofev has a harder job. Please take your meds and make sure you use oxygen as needed.
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Adele Friedman
MemberMay 23, 2024 at 2:52 pm in reply to: Feeling tied to that 120VAC outlet for your plug-in heavier duty concentrator?Be careful of thinking the settings, 1-6. on the Inogen G5 are liters per minute. They’re not. Setting 6 is about 1.26 liters/min. My six minute walk scores improved when I bagged the G5 and went to a tank where liters per minute are actually that. This is true of many POCs.
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I’ve taken mycophenolate since late January 2022, 1000 mg twice a day. Dramatic reduction of inflammation, improvement of PFT scores. No drug, of course, will reverse any scarring already present, and I still have all of that.
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I just read an article in JAMA (Journal of the American Medical Association) about ILD, and this was one aspect covered. Generally, perfenidone and nitedanib are used for IPF and mycophenolate mofetil more likely to be used (and effective) in ILD caused by connective tissue diseases. It has worked for me, Sjogren’s Syndrome being my CTD cause of ILD.
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IPF does NOT include fibrosis with a known cause, such as an autoimmune disease. I think Covid-induced worsening of fibrosis is just one example of an infection worsening existing PF. It also doesn’t seem right to call Covid-induced PF “I”PF, because it isn’t idiopathic. Covid caused it. However, there could be people who had undiagnosed fibrosis and then got Covid and worsened. I guess the only way to know for sure exactly how much PF Covid caused is if one had HRCT or other imaging shortly before Covid and then soon after
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I don’t have this. Is he checking his temp with a thermometer? (Not just assuming he has one because his forehead is warm or he feels warm with activity.) If he is running a fever, does he have other symptoms of illness? Might be good to talk to his doctor.
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That is the gold standard for clinical trials: randomized, double-blind, meaning neither you nor the people giving/making the drug know who gets what until it’s over. It’s done this way to avoid bias.
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Adele Friedman
MemberAugust 17, 2023 at 2:51 pm in reply to: Initial Oximeter readings sometimes lowIn a recent talk by a respiratory therapist, sponsored by PF Warriors, I believe, he stated in takes at least 45 seconds to get an accurate reading from fingertip pulse oximeters. After I heard that I had a medical appointment and complimented the tech on waiting before taking the reading. If a forehead-sensor pulse oximeter is used, it may be accurate in less time, but that’s not common.
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Just want to mention there are some drugs that may relieve SOME symptoms without heavy side effects. In my case, mycophenolate resolved a lot of inflammation, along with nebulizer and later, Symbicort through an Aerochamber. I don’t have IPF; I have ILD caused by Sjogren’s Syndrome (an autoimmune condition).
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I became very short of breath heading across a parking lot into a store. A couple days later, I was diagnosed with pneumonia in an urgent care clinic. I thought it was weird I had no symptoms other than SOB because I thought pneumonia involved more than just that. A few days later, no better, I went to my primary care doc and got another short course of antibiotics. Came back to primary care and short walk test made them decide I should go to the ED at local hospital. Doctor there diagnosed me with pulmonary fibrosis, based on the lack of resolution of the “pneumonia”, which I’d never had, and xray he took. He told me to call local pulmonology appointment that day. It was Dec. 21, 2021 and the soonest appointment was Feb. 1, 2022. Fortunately, I was able to get into an ILD center two hours away a few days sooner. I continue there, and basic care like PFTs and walk tests at the local pulmonologist.
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ECMO stands for Extra-Corporeal Membrane Oxygenation. Extra-Corporeal means “outside the body”. It oxygenates the blood outside of the body, then returns it. Whereas ventilation puts oxygen into the lungs and relies on oxygen transfering into the blood.
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Inogen has one and I actually received two when I bought my G5.
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First thing that comes to mind is whether you really have “I”PF. Many who have PF, scarring in lungs, actually have a cause for it if sufficient diagnostic testing is done. PFTs and walk tests can vary. It’s the trend over time that matters most. One of the most important, FVC (forced vital capacity) is improved generally by losing weight, if you were overweight. Indeed, the scans do show whether, and how much, fibrosis is progressing. Wonder if you have had extensive bloodwork to see if your PF has a cause, like my Sjogren’s Syndrome, and other autoimmune diseases.
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Thank you, Dr. Strum, good info. And thanks to everyone participating on this thread. Of course, if there are nodules in the lungs that seem suspicious, one may have to have CTs more often.
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Thank you, Dr. Strum. I’m glad I was on track.
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He may be trying to assess how much, if any, your fibrosis progresses in six months. That’s something that could be valid initially, but HRCTs are not routinely done at specific time intervals indefinitely. It is pretty routine to have PFTs and walk tests every six months, maybe more often in some cases. CTs and HRCTs are noninvasive, but involve a fair amount of radiation compared to other “scanning” procedures, so it’s generally wise to do them only when there’s a solid clinical indication. For example, dramatic worsening of condition.
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It’s hard to see what good a biopsy would do at this point. There seems to be ample evidence that you need a lung transplant, if you are eligible and want to do it. Would this surgeon be the one doing the transplant? I rather hope not, because I’m deeply wary of doctors suggesting lung biopsy (or any other risky, invasive diagnostic procedure) without it doing much to change treatment. Biopsies are being done less, with all the other tests available-still some cases where it may be needed, such as determining treatment for lung cancer. I would ask for the reasoning. Second opinion, for sure! Good luck.
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SOB does not always correlate well with oxygen saturation, although for me, it usually does. Millie, regarding the pool, I don’t swim, more do water aerobics type exercises, sometimes using the noodle for certain things. I once brought a hand towel and my oximeter poolside to check quickly as I worked out. Is it posssible you are climbing up pool steps and walking to where your oximeter is, becoming hypoxic during that process? I hope you will check what O2 sat is in pool.
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Please don’t assume your O2 saturation during sleep is ok. There is an overnight test to see how low you drop, how often you drop below 90 and how long each event lasts. Even if you take a pulse ox reading right away upon waking up, it does not mean you are ok during sleep. A few breaths upon awakening brings the number up. And it may be far better than you were at points during your sleep.
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I have been diagnosed with asthma and have heard nothing about Symbicort being a problem for it. In fact, a quick Google shows it is used for asthma. Ask the doc.
https://www.mysymbicort.com/asthma.html