Linda Maguire
Forum Replies Created
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I was diagnosed in November, 2015. I had had a chronic cough for about 5 years, which I attributed to allergies. Upon the urging of my husband, I mentioned this to my PCP. She sent me for XRays, which suggested I might have pneumonia. When the cough did not improve after an antibiotic, she sent me for a CT scan which showed scarring of my lungs. I was immediately referred to a pulmonologist who diagnosed me with IPF at my first visit! My pulmonologist ordered about 40 blood tests to rule out autoimmune diseases, as I had no risk factors for IPF. She also sent me for a barium swallow to rule out GERD. To my surprise, I was told I had TERRIBLE GERD, in spite of no heartburn or other symptoms, other than the cough. I subsequently saw a GI who diagnosed me with Silent Reflux and put me on Omeprazole. My pulmonologist believes the silent reflux is what caused the scarring in my lungs. I have had no progression of my disease and am not on any anti-fibrotic medications, just Omeprazole. I try to eat well & exercise regularly, and am hopeful I will remain stable until a medication is discovered that can reverse scarring.
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I have been living with IPF for 10 years with no progression of the disease. I am not on any medication other than Omeprazole to treat silent reflux. I think smoking or vaping ANYTHING is damaging to your lungs!! If you want to use Medical MJ, I would suggest an edible rather than vaping!! I doubt that this is what is keeping you alive, and also don’t believe your MD won’t recommend it because of Big Pharma! Each individual has to make their own choices, however I think proper diet & regular, cardio exercise are key to slowing progression of IPF.
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I’ve been attending a local support group since my diagnosis in 2015. We were meeting in the hospital and had a number of speakers, which I found very informative & helpful. Since Covid we have monthly meetings by Zoom with limited speakers. Our participation has dwindled, & I’m no longer finding the meetings very helpful, because we primarily discuss our “journey” each month and there is no new information.
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I totally agree! I read a post on the forum several years ago by a gentleman in the U.K. who was using a high dose over the counter medication due to reading about it helping with fibrosis in a study of MICE. Although I understand that one might be desperate for a treatment, self-prescribing & taking medications or supplements without a doctor’s advice can sometimes be more harmful than helpful!!
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I think if you have doubts, definitely seek a 2nd opinion. I don’t know much about RA induced PF, but sounds like you’re getting treatment for the RA only. When I was diagnosed, my pulmonologist suggested I keep a notebook with all of my test results, so I always ask her for a copy of my PFT & 6 min. walk results so that I have a record & can compare the numbers from year to year myself. I can read & print the CT results from the patient portal & keep those as well. Best of luck!
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I am 76 years old & was diagnosed with IPF almost 10 years ago when trying to get an explanation for my chronic cough. I live in Virginia Beach, VA (a high allergy area), but am originally from CO. I have no known risk factors, but after being diagnosed with IPF, I was also diagnosed with silent reflux (GERD), which my pulmonologist thinks caused the IPF. We have an active support group in our area, however we have been meeting on Zoom since the pandemic started. If anyone has difficulty attending a local support group in person, they might consider asking if the group offers a Zoom meeting format, as well.
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I was also diagnosed with silent reflux (GERD) shortly after my diagnosis of IPF. My pulmonologist referred me for a barium swallow test, which came back positive. I was very surprised, as I very seldom had any heartburn or other symptoms, just a chronic, dry cough, which I attributed to allergies. An endoscopy confirmed the diagnosis. I am currently taking omeprazole, 40 mg bid, having been increased from 20 mg bid. My pulmonologist believes the undiagnosed reflux caused my IPF, as I have no other risk factors. My gastroenterologist was skeptical, as there is little research about this, however he has become a believer, as I have had no progression of my disease in almost 10 years, with only the omeprazole for treatment. The little research available shows a high correlation between IPF & GERD, so anyone with IPF & a chronic cough might want to explore whether they might have silent reflux, too.
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I’m one of the lucky IPF patients that has minimal problems, however, I do find it harder to breathe in cold weather. I wear warm clothing, in layers, & find that it is helpful to wrap a scarf loosely around my mouth & nose when outdoors or wear a mask to keep the air I breathe warmer & less of an “assault” on my lungs.
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I was diagnosed with IPF in 11/2015 and retired in 5/2020 at the age of 71. I had a sedentary job as a psychotherapist, so physical exertion was not a factor, and my IPF impacted my job minimally. Although I loved my work, I would have probably retired at that time anyway, as I wanted some years to travel & just have fun, but I also did not enjoy doing therapy over telehealth (due to the pandemic). In my case, I only have shortness of breath with a moderate degree of exertion, and my disease has not progressed to date. I am not on any medication, and Medicare & my supplemental insurance have been great & have covered all tests & MD appointments after I meet the deductible. Retiring would have been a difficult decision if the IPF impacted my work or I had to depend upon employment for health insurance.
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I think it is fairly typical to see your pulmonologist every 6 months, although when I was first diagnosed, I was seeing mine much more often than that. I gradually shifted from monthly to every 4 months, then to every 6 months. I think alot depends upon how far the fibrosis has progressed. I was diagnosed almost 9 years ago, and my pulmonologist thinks that undiagnosed silent reflux (GERD) is what caused my fibrosis, as I have no other risk factors. I started Prilosec twice daily, and my fibrosis has been stable. I haven’t started antifibrotic medication since there has been no progression. I see my pulmonologist every 6 months, do a PFT once a year, a CT scan once a year, & a 6 min. walk once a year. I believe you have to advocate for yourself, & if your pulmonologist recommended a CT scan but hasn’t ordered it yet, I would call the office & ask if he/she intends to order it. Take a list of questions with you to your appointment & let your provider know that you have concerns that you would like to address. If this still doesn’t get your questions answered, it might be time to find another provider.
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Medication pros & cons is something to discuss with your pulmonologist, and also determine based upon your symptoms, PFT’s, 6 min. walks & CT results. I was diagnosed 8 years ago due to a chronic cough & have no risk factors, but it was determined that I have “silent” reflux, which may be the cause of my IPF. My GI has been treating the reflux with Prilosec; but my pulmonologist & I agreed not to proceed with an anti-fibrotic unless I developed shortness of breath or showed progression on my CT scans. Happy to report that I have been stable, & my PFT results have actually improved! All my numbers are normal or above, even though my DLCO had historically been below normal until this past year. If you’re not having symptoms & all tests are stable, you might follow up with your pulmonologist on a regular basis, every 4-6 months, just to monitor your progression, & wait on the anti-fibrotics. Some people in my support group have side effects from the medications and others don’t. I got a 2nd opinion at National Jewish in Denver, & they concurred with this approach. For me, treating the GERD I didn’t know I had, seems to be key.
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Covid can definitely cause a decrease in lung function. Has your husband considered pulmonary rehab to increase his stamina?
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I live in Virginia Beach, VA where there is often a very high pollen count & have allergies almost all year. I have found that using a saline nasal rinse helps some, although I have to resort to using Flonase nasal spray when the pollen is really bad.
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George,
When I was diagnosed with IPF 8 years ago, my pulmonologist did about 40 blood tests, as well as a barium swallow, because I had no risk factors. Surprisingly, I was diagnosed with GERD, although I rarely have symptoms. I am thought to have “silent” reflux, which is probably the cause of my IPF. I am on Prilosec, & my IPF has remained stable. I’m not taking any anti-fibrotic meds. at this point, and hope to be able to avoid them. There seems to be a fairly strong link between GERD & IPF, which has been researched by Janet Lee, MD, but without conclusive data.
Based upon observation of the individuals in my support group, there also seems to be a link with people in the dental field and people who have been in the Navy. Probably exposure to chemicals. I think we’d all like to know what caused our disease, but eating healthily and exercising seems to be the best focus for retaining the lung function we currently have.
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My pulmonologist recommended a device called Aerobika, which is designed to both strengthen your lungs and reduce mucous, which helps with the chronic cough many of us have.
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Did you have a CT scan in the hospital? That is usually required, as well as a PFT, to diagnose IPF! Keep asking questions & advocating for what you need to get a definitive diagnosis & whatever treatment your pulmonologist has ordered. I have not had any problems with Medicare approving tests that have been ordered.
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My pulmonologist recommended I use the Aerobika device to both strengthen my lungs and help clear mucous to decrease my cough. I ordered it on Amazon, but I believe you may also be able to get it at Walgreen’s. I don’t know about the AirPhysio, but a member of my support group has been using something similar & feels it has really helped increase his lung capacity. Best of luck!
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It is currently “open season” in the U.S., which is the time you can choose your Part D Medicare drug plan for the next year. Do the research to find which insurance has the most coverage for whatever medications you are taking, as they vary significantly! I believe Ofev is a Tier 5 drug, which means that it is very expensive (over $100,000 per year).
Although it won’t solve the immediate problem, also consider writing to your Senators & Congressmen/women about the need to regulate the high cost of prescription drugs, especially those that are lifesaving!
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UIP stands for “Usual Interstitial Pneumonia” vs NSIP, which is “Non-specific Interstitial Pneumonia”. IPF is usually categorized as one of these two types. UIP is more common but has a less favorable outcome
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P.S. Due to my IPF, most surgeons have wanted to do the surgery in a hospital, rather than an outpatient clinic, in case there would be an issue with my breathing during surgery.
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I’ve had a few minor surgeries as well as a lung biopsy since diagnosis. I think the most important issue is to let both the surgeon & the anesthesiologist know about your IPF so that they can be extra cautious about monitoring your oxygen levels during surgery. I haven’t had any complications.
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Jan,
From what I understand the trial by Leapcure is a drug called LYT-100. If I understand correctly, it is a “cleaned up” version of Ofev, meaning that they have tried to reduce side effects by removing some of the chemicals to make the drug more tolerable. It might be worth contacting them to get more information about the drug. Linda
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If you are eligible for Social Security due to your age, you cannot collect SSDI, which is Social Security Disability Insurance. Plus, it pays less than regular Social Security, which is based upon your work history. Just having a diagnosis of IPF does not necessarily qualify one for SSDI. They look at your functionality and will get all of your MD reports, test results, etc. Generally speaking, one has to have a significant disability to get SSDI. I was diagnosed in 2015 & continued to work until I was 71, however I started taking my Social Security at 68 because I didn’t know how quickly the disease would progress. (My original plan was to wait to take SS at 70). I am a Clinical Social Worker, and based upon my experience with my own mental health patients, one is often turned down the first time they apply for SSDI, and it sometimes takes hiring an attorney to be approved. However, just having a diagnosis doesn’t necessarily qualify one for SSDI, as it is based upon whether you are capable of working.
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I think the age criteria varies, depending on the transplant center. I was told recently that many centers have increased their age limit from 70 to 80.