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…

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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,…

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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…

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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…

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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 &…

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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…

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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…

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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.

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…

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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…

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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…

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Covid can definitely cause a decrease in lung function. Has your husband considered pulmonary rehab to increase his stamina?

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.

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…

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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.

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.

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…

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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…

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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

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.

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.

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.

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

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… Read more

A lot depends on the stage of your husband’s fibrosis at the time of diagnosis.  Everyone is different, and everyone’s disease progresses at a different rate.  I was diagnosed in 2015 with moderate lower lobe fibrosis, and have had only very mild progression.  I am not on anti-fibrotic medication and my PFT’s are normal or above, however it was… Read more

I had had a chronic, dry cough for about 5 years, which I attributed to allergies.  When my husband pressured me to have it checked out, I talked to my PCP during a physical, & she sent me for an XRay.  That showed what appeared to be pneumonia.  I was treated with an antibiotic & sent for a CT scan which showed the fibrosis.  That was in… Read more

I’m fully vaccinated & boosted but still wear a mask when in crowded or indoor situations (grocery store, etc.), at Doctor’s offices, on public transportation and especially when flying.  Very few people are wearing masks these days in the U.S. or Europe, however those of us with IPF are at extra risk; and even getting a serious cold or… Read more

There is a breathing technique called “pursed lip breathing” that is designed to increase O2.  You breathe in through your nose, then out through your mouth with your lips pursed, as if you are about to give a kiss.  It takes some practice, but I find it useful when I am exerting myself & get SOB.

A diagnosis can be made with a CT scan & is not dependent upon PFT, from what I understand.  The PFT gives information about what aspects of breathing & lung function are problematic & which are normal.  You might practice a long exhale with your Dad while he is relaxed & not having to “perform”, like during a test.  Maybe if you can… Read more

Although the covid vaccine may not prevent you from getting covid, it lessens your symptoms & could save your life!!  Those of us with IPF are at higher risk & more likely to be hospitalized or die from covid, so the vaccine is an important protection.  Duke University says it is NOT necessary to wait for a mammogram after getting vaccinated. … Read more

Allan,

Have you been evaluated for GERD (Reflux)?  When I was diagnosed with IPF 7 years ago, my newly acquired pulmonologist sent me for a myriad of tests, one of which was a barium swallow to rule out GERD.  I had had a dry cough for about 5 years prior, which was what eventually led to my diagnosis, but I had no symptoms of reflux!  I had… Read more

Steve,

I live in Virginia Beach but the support group covers Norfolk, Virginia Beach, Chesapeake & Suffolk.  There is another support group nearby for the folks in Williamsburg, Hampton & Newport News.  VCU in Richmond has recently been named as a Care Center, so we now have a Center a couple hours away instead of going 4 hours to UVA or D.C.… Read more

Wesley,

Is there an IPF support group where you live?  I live in Virginia & there are a number of support groups for IPF patients & caregivers that meet monthly & share information, have speakers, and provide support for each other as we deal with this disease.  Meetings have been via zoom since the pandemic, but we previously met in person. … Read more

After a trip to Croatia in July, 2022 where a few of the members in our tour group came down with Covid (& were subsequently isolated),  I tested positive with Covid 2 days after we returned.  I had had the 1/2 dose 2nd booster 3 weeks before the trip.  My only symptoms were nasal congestion & fatigue.  I credit the vaccinations & boosters… Read more

There have been several alternative treatment suggestions as well as exercise mentioned on this forum.  Some folks recommended taking green tea extract, however I have not seen any large studies that support this.  On the other hand, there is some research to support a series of Chinese breathing techniques that have shown good results in IPF… Read more

I went to National Jewish Health in Denver, CO 6 years ago for a 2nd opinion about my diagnosis of IPF.  At that time, they were doing a study of familial IPF.  Anyone interested in a possible genetic connection might contact them to see if they are still recruiting for the study.

Joe,

I agree with Colin.  A lot can depend on the cause of the fibrosis as to whether it will progress or not, but it sounds like you’re in great shape at the moment, so I wouldn’t stress about the fibrosis.  It sounds mild, but should probably be monitored every 6 mo. to a year with a PFT & 6 min. walk & annual HRCT to observe for any… Read more

According to an article in this forum on Wednesday, Esbriet is now available as a generic through Sandoz.  Not sure when the pharmacies will have it available, but the cost should be much less.

Pam,

Sorry to hear about your IPF diagnosis.  I was diagnosed in November, 2015 & was totally shocked to read the 2-5 year prognosis!  I cried every day for the first 6 months.  My pulmonologist is very pro-active & ordered bloodwork to rule out about 40 autoimmune disorders since I had no precipitating factors.  She also referred me for a… Read more

Pam,

Sorry to hear about your IPF diagnosis.  I was diagnosed in November, 2015 & was totally shocked to read the 2-5 year prognosis!  I cried every day for the first 6 months.  My pulmonologist is very pro-active & ordered bloodwork to rule out about 40 autoimmune disorders since I had no precipitating factors.  She also referred me for a… Read more

Breathlessness

Cough

Frightening

Overwhelming

I think an HRCT is pretty good at diagnosing IPF.  My pulmonologist wanted me to have a lung biopsy to be sure.  After the biopsy confirmed IPF, I went to National Jewish Hospital in Denver for a 2nd opinion, & they didn’t think the biopsy was necessary.

Chamomile or other herbal teas are ok, but wouldn’t be the same as Scotch! 🙂  My friends have adjusted to me eating early, only having 1 glass of wine, & bringing my own herbal tea.  After 6 years of doing this, I’m used to it.

Do you play professionally or just for fun?  My nephew is a professional poker player.

Might be worth having… Read more

Patrick,

I’ve been diagnosed with “silent” reflux.  I had no symptoms other than throat clearing, a chronic cough (which is what lead me on the path to the diagnosis of IPF) & noticing that I could no longer sing well.  I was referred to a  pulmonologist after an HRCT showed some fibrosis, & she sent me for about 40 blood tests to rule out an… Read more

Patrick,

I’ve been diagnosed with “silent” reflux.  I had no symptoms other than throat clearing, a chronic cough (which is what lead me on the path to the diagnosis of IPF) & noticing that I could no longer sing well.  I was referred to a  pulmonologist after an HRCT showed some fibrosis, & she sent me for about 40 blood tests to rule out an… Read more

Kris,

If you have a definitive diagnosis of IPF, taking Ofev or Esbriet might help.  It sounds as if your shortness of breath is progressing rapidly!  Be aware that anti-fibrotic meds don’t reverse fibrosis, they only slow the progression.  I would try to get more information from your pulmonologist about why your breathing might be… Read more

Charlene,

On my first visit with my pulmonologist, she told me she was sure I had IPF based on my HRCT & recommended Ofev or Esbriet if a lung biopsy confirmed the diagnosis.  The VATS lung biopsy indicated a UIP pattern of IPF, however I chose to get a 2nd opinion at National Jewish Hospital in Denver, CO.  They gave me a thorough 5 day… Read more

Charlene,

On my first visit with my pulmonologist, she told me she was sure I had IPF based on my HRCT & recommended Ofev or Esbriet if a lung biopsy confirmed the diagnosis.  The VATS lung biopsy indicated a UIP pattern of IPF, however I chose to get a 2nd opinion at National Jewish Hospital in Denver, CO.  They gave me a thorough 5 day… Read more

Kris,

Are you seeing a pulmonologist & have you had a high resolution CT scan?  As mentioned by Don, there are multiple types of ILD’s and you don’t want to start an anti-fibrotic without a definitive diagnosis of IPF/PF.  I, too, had a VATS biopsy, however if there is a clear cut pattern of IPF on your HRCT, that may not be necessary.  I was… Read more

The 3 Chinese exercises referred to by James Christenberry showed good results at 6 & 12 months in a study published in the Annals of Palliative Medicine with improvements on PFT numbers compared to the control group (google Annals of Palliative Medicine Breathing Exercises for IPF to see the exercises & study results).  Exercises are easy… Read more