Pulmonary Fibrosis News Forums Forums Treatments and Science Drug Induced IPF (unknown cause) Meds?

  • Drug Induced IPF (unknown cause) Meds?

    Posted by george-poulsen on April 19, 2024 at 2:28 pm

    Age 84 with IPF and plagued with no better explanation than “ideopathic means unknown cause” and realizing that a very large percentage of us are considered IPF (Unknown cause). Maybe we need to look closely at what we have done differently than others? Drug induced pulmonary fibrosis is a category.

    So here’s my question and I’d love to see it answered in a rough polling of sorts.

    1. How many of us with IPF have had heart surgery or other internal chest surgery? Yes or no

    2. How many people with IPF have been taking blood thinners for, lets say longer than 5 years

    3. How many of us have been diagnosed with Gerd at any point in life and take Proton Pump Inhibitor medicines like Omaprazole? yes or know

    4. How many us have looked at old xrays analyses for mention of parenchymal scarring in the past?

    *****I have become curious about the source of my unknown source and have asked the question many ways especially with some more in-depth Artifical Intelligence searches. I have asked generally whether Blood thinning medications (like my Xarelto or Plavix) can be a cause of Lung scarring. The primary answers are “Generally not” but there is always that caveat that says parphrased “this drug is not typically associated with lung scarring but not typically listed among drugs that cause lung scarring”. Hmmnn what does “not typically” mean here? Are there any real instances then? Some drugs like Amiodarone are identified with Lung Scarring so why not carefully examine what we are taking and discuss with your pharmacist or doctor for in depth explanations?

    My questions may seem silly, but my disease with “unknown source” just seems to be too big of an unknown if is creating a one way trip, no? So I’m sure we all sit back and ask “why me”, maybe we need to do more to find the commonalities between us when unknown. I’m not a chemist or scientist or medical person but I feel we can all contribute to this greater knowlege because once they say here’s why, we may say Gosh! I knew that but never asked.

    George

    george-poulsen replied 1 week ago 14 Members · 29 Replies
  • 29 Replies
  • alam

    Member
    April 23, 2024 at 3:01 pm

    Hi : I am Alam Khan. Had stents few yeras back, then CABG. I have been on Plavix for many years.

    My Eosinophil count have been very high. 2 .5 yrs back I found I have Pulm fibrosis. We found out i had Eosinopjilic pnemonitis , which caused pulm fibrosis, I stopped Plavix . My eosinophil count went dowm,but Plavix surely did the damage. I am on Ofev 150 mg BID, Sometimes it gives me lot of diarrhea, so I cut down the dose to once a day. I am looking forward to go on some trial meds. My cough has increased with thick sputum. Anyone can suggest me about cough. Thanks

  • Rhonda Kramer

    Member
    April 23, 2024 at 11:09 pm

    I know Macrobids can cause PF; they didn’t cause mine because I only took one before I looked it up, and also it was after I had been dx’d. I’m pretty certain the cause of mine was work related. I worked in a vet clinic and was exposed several toxin-chemical and otherwise. Was it the mice that lived in the ventilation system, with a vent right under my desk? Was it the helpers mixing the dangerous chemical that we cleaned kennels with because it killed Parvo too strong? Was it zoonosis brought in by one of the 100 feral cats that were brought in, sick, 3 to 4 to a kennel, by a well meaning lady? I don’t know. But I do know that I went to work and walked the dogs that Friday morning in freezing temps with no problem, and by 4 pm my throat felt like it was closing up; by 3 am on Monday I was in the ER and on oxygen forever more. The rep for the chemical admitted only that it “could cause asthma”. I’ve wondered for 12 years now.

  • Alex Marion

    Member
    April 25, 2024 at 7:16 am

    My wife was diagnosed with ipf last year, after having a pneumonia. Further conversation with the pulmonologist, considered to stop nitrofurantoin use as prophylaxis, that she took for 7 years, for recurring uti.

    Personally, I think it was the cause, because she started having pneumonia 3 months after started with medication. In the middle off this 7 years, she also got covid.

    We had 2 more seconds opinion, and all says ipf, but, it coul be a post covid pf or a dipf , as they suspect it may have played a role.

    In sum, she quit the macrobid in may 2023, in August had her first lung function test, and in February another one, where she had an improvement of 9% fvc and fev1 as a decrease of 5% of reserve volume, indicating improvement without any antfibrotics or any other drug.the dlco reading were not possible, but, in another lft, was 89% from 58%, but I need to confirm. I read abut dipf, and discovered that sometimes it resolves, but the damage remains, at the moment she still asymptomatic and with perfect health, besides ipf, but, she will follow up with more pft, and ct scans. To see if there is progression, as it for now, there is non, but the ct scan taken in may shows honeycomb and uip.

    2 doctors suspect that this is more covid related than anything else, but, do not how to treat it. In July she will have another lft, and I will post the results.

  • Alex Marion

    Member
    April 25, 2024 at 7:36 am

    Further more, it is important to focus in the healthy diet, staying away from irritants, drinking water, an most important, excersice, I cannot emphasize more this, excersice and in the forms of strength training, is the most important thing so far she found to manage the depression of this condition.i believed that Lee Fogle, Steve Drage, recommendations are spot on, maintain an active lifestyle helps the fight.

  • george-poulsen

    Member
    April 25, 2024 at 1:15 pm

    Only a tidbit, but maybe an iceburg?

    This is very important to go to this URL address ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8285274/ ) and read the article on Drug induced ILD/IPF and read all and carefully note that it may have much further implications concerning drugs you may be on or have been on even though it only cites one specific case. Certainly its not a reason to panic or to do anything without a discussion with your doctor. But it sure makes for a good reason to have that discussion. So do the further research first and include any drug you may be taking, you never know.

    I have had suspicions of anything I was doing or operations or Rx drugs I was taking clear back to the beginning of my IPF. Trying to figure out “why me?”, because “things don’t just happen”. Although the one cited here is said to be a rare case, it is documented and has certainly gotten my attention, and if there’s one there may be a lot more. Notice it has implications for a much larger set or class of drugs that have been successful elsewhere and thought to maybe work with ILD too and we all need to be doing some serious research on word combinations of our specific drugs and types of ILD. I would also suggest that if you have the new test Search apps of Google and Microsoft etc that are using artificial intelligence to operate more efficiently, do so. The one I am using is “Co-Pilot.

    So far I have spotted two drugs that I have been taking for some time and one is a DMARD /antirhythmic drug and the other is a blood thinner . I believe I have also been on a third which is a blood thinner too. By the way the Clopidogrel mentioned in this article is Plavix by brand name. Of interest is that there is a correlation of drugs I have taken and time-wise the development of my ILD and if I don’t slow it down myself I’m not sure who else will :-).

    Seems too easy to say something doesn’t fit our template so lets just call it “Ideopathic”, which means source unknown. Every one is working hard at this so lets see how much we can add by our own knowledge of what we are, what we take, what we have have experienced and what may have helped develop this thing called ILD?

  • george-poulsen

    Member
    April 25, 2024 at 1:56 pm

    Alex-Marion Hhmmnn interesting. I just poked ILD Lung scarring and Nutrofurantoin into Co-Pilot and got this:

    Copilot

    <cib-message animate=”” visible=”” type=”text” source=”bot” mode=”conversation” serp-slot=”none” product=”windows” density=”normal” table-version=”1″ current=”” indicator=”” katex-scroll=”” output-background=”” full-width=”” goldilocks-line-height=”” goldilocks-citation=”” goldilocks-attributions=”” goldilocks-message-actions=”” goldilocks-turn-counter=”” goldilocks-view-more=”” chat-type=”consumer” chat-state=”ok” attributions=”” finalized=””><cib-shared serp-slot=”none”>

    Nitrofurantoin is an antibiotic commonly used to treat urinary tract infections, but it has been associated with pulmonary toxicity, which can manifest in two main forms: acute and chronic. The acute form typically occurs around nine days after starting the medication, while the chronic form can develop after months or years of therapy<sup>1</sup>.

    The majority of patients who experience pulmonary reactions to nitrofurantoin are women, likely due to the higher incidence of urinary tract infections in women and consequently more frequent exposure to the drug<sup>1</sup>. Pulmonary reactions to nitrofurantoin can range from mild to severe, with some cases resulting in hospitalization<sup>1</sup>.

    Interstitial lung disease (ILD) is a group of conditions that cause inflammation and scarring in the lungs, and nitrofurantoin has been identified as one of the medications that can induce ILD<sup>2</sup><sup>3</sup>. The scarring, also known as pulmonary fibrosis, is often irreversible and can lead to significant respiratory impairment<sup>2</sup>.

    It’s important to note that while nitrofurantoin can cause ILD, this reaction is considered rare. The risk increases with chronic use, and older adults may be at higher risk<sup>1</sup>. If you have concerns about nitrofurantoin and its potential effects, it’s best to consult with a healthcare provider for personalized medical advice.

    </cib-shared></cib-message>

  • bradley

    Member
    April 25, 2024 at 4:37 pm

    I was born 1942. Have had IPF as diagnosed for 4 1/2 years and started on pirfenidone just 3 months ago. Regarding your survey, I can say yes to questions 1, 2 and 3. As for scaring, I can’t say that it was seen before being diagnosed with IPF. Smoking is another question you can ask. I smoked cigarettes for 25 years quiting in 1986. Also what about anyone working with or around chemicals that were inhaled?

    As for genetics, my dad was diagnosed with lung cancer in 1994. They said it was caused by asbestos but I suspect it was IPF as he was on oxygen in the end. Additionally, my son who is 59 has been diagnosed with IPF as well.

    Mark Anderson

    • John Fraze

      Member
      April 25, 2024 at 5:09 pm

      Chest medical journal/flecainide.

    • george-poulsen

      Member
      April 26, 2024 at 1:31 pm

      Bradley, when I was “diagnosed”it was in 2020, but when I checked back with my own file cabinet for past issues of other things, and several hospitals and clinics where I had xrays in earlier times (and got copies of the cd and the diagnosis at that time) I was able to create a timeline of sorts that said some scarring was diagnosed on xrays at least 12 years ago as simply “paranchimal scarring”, but nobody really said anything because it wasn’t what they were pursuing at the time or for breathing difficulties I was slowly developing but hadn’t caused any real problems yet. But it did give me a general time area to think about as to what things was I doing at that time and what Rx drugs was I taking, and even an open heart surgery I had. Kind of made me think there could have been a start do to something in that area. So I looked in more detail with no specific findings.

      Seems like when it develops enough to become an identifiable problem in itself that a really sharp doctor says “hey, you probably should see a Pulmonologist”. Then the problem seems to be with whether your particular condition fits one of the already defined areas like environmental or Copd or Rheumatoid Arthritis or one of many others and that can qualify for one of the two drugs for IPF or other maladies. Yes they sure do jump on the smoking issues (if I only paid more attention as a kid with my pack rolled up in my t-shirt, yep!) it’s a biggee.

      However, I think we are underselling the value of checking our Rx drugs very carefully using some of the new info searches that are using Artificial Intelligence to expand their reach. I use Microsoft’s “COPILOT” I have personally felt very useful to myself in doing my own research and of course the name of the game is to use alternate words or names for your drug/s and include “lung scarring” or “fibrosis” or ILD, or lung disease and be creative and it might just surprise you with some ideas of Drug Induced sources for this scarring. One way for example could be . There is the ‘possibility’ that a drug could be causing some of our problems and in some cases simply stopping the catalyst may be a partial answer although scarring elimination itself is still being worked on at many levels, so meantime maybe just stopping the scarring at the source if possible is a good thought. Of course if a possible answer pops up on that pc it would sure indicate a visit or frank conversation with your Pulmonologist or VA clinic. PS, I am not a professional, just a guy who is unsatisfied with my condition and the answers that too easily put me in an “unknown” source box and it just doesn’t feel right yet and is too big of a box. I also notice that the Forum already indicates a number of drugs that can be issues correlated with Fibrosis.

      You know, way back in the Air Force in 1967 on my exit physical a doctor told me I didn’t scar very well (big white collagen marks where I had a few minor surgeries) and it could give me a problem later on. Maybe that was a missed warning that I never thought about till much, much later?

  • daniel nogueira

    Member
    April 25, 2024 at 6:51 pm

    Hi, age 69, diagnosed 3 years ago (was mildly short-breathing when swimming) and on pirfenidone for just over 2 years. I’m from Uruguay and live there, only 3 millón people and if IPF is a rare desease, imagine here. My answer to all questions is “none of the above”. I always thought smoking would have something to do (smoked from 11 to 55 with a few quits in between) but my neumologist says cigarette is fully unrelated. But, does she really know when smoking has been linked to so many deseases?<div>

    Anyways, not sure if knowing the cause can help any of us, though it can help others. I try to deal with this with optimism and not stopping doing things. I took back golf but can’t push the carriage for too long. Stairs and ways up kill my oxygen but still try them (currently on holidays in Italy and walking 8-10 miles per day).

    Other than smoking, taking artificial sweeteners has been my only old habit. I am surprised that neumologists do not carry out very in depth questionnaires with IPF patients. Mine only asked me if I had been exposed to asbestos and things like that. The only way to stop this from being idiopathic is investigating by asking but, is any serious doctor doing it?

    <div>

    </div></div>

  • Meredith

    Member
    April 25, 2024 at 8:37 pm

    I don’t have any confidence in my ability to research causes of IPF. My pulmonologist did that when I was diagnosed 4 years ago. I am 81 years old.

    I have been on oxygen the whole time.

    My medications for other things have not changed. I jut have IPF.

    I don’t think the cause matters at this point. I eat well, don’t drink, exercise moderately, yet still have this disease.

    Treat your symptoms forget about the cause. You are past the stage of prevention.

    GET ON WITH LIVING LIFE TO THE BEST OF YOUR ABILITY EVERYDAY.

    M

  • JohnUSMC

    Member
    April 25, 2024 at 9:05 pm

    I am 72 and have IPF for 4 years. Initially they said it came from GERD. Now one doctor said i have it from scleroderma which they have now found in me. I take Omeprazole. I truly believe it was spiked by COVID and them maybe the vaccinations.

    No heart issues however my heart rate gets very high with exertion and SOB.

    NOW THE IPF is interstitial pulmonary fibrosis. I take mycophenolate.

    • george-poulsen

      Member
      May 15, 2024 at 3:17 pm

      John maybe you could add some info to the Post I just made asking for those who may have used Mycophenolate or Celcept?

      Haven’t seen many people say they are using it but my Rheumatologist just pushed me very hard to use this for my Fibrosis that is theoretically caused by a very mild bit of Rheumatoid arthritis. She says she has a number of people who have used this successfully. Sounds a whole lot cheaper at $47 with Medicare (or I could go VA also) and side effects look to be a lot less than OFEV. So, I’m interested but would love to see more input from other users too. Its been around a long time for cancer use and sometimes thats more important than just the latest?

      Do you know the source of your Fibrosis or type?

      PS If you use any Microsoft on your PC, you’ll find the “Co-pilot” app that is free trial from MIcrosoft is a really thorough search engine to try. It gives a whole bunch of data on this drug and others you might be looking up. I believe it is using the new Artificial Intelligence programming to create its data.

      George

  • Millie

    Member
    April 26, 2024 at 7:17 am

    It was suggested to me that the asbestos in baby powder could have been the culprit. For years I doused my breasts with the stuff after showering and it created lots of dust which I inhaled. AHA—-asbestos in the lungs.

  • george-poulsen

    Member
    April 26, 2024 at 2:10 pm

    Dan, I have kind of become intrigued with the idea of finding something that standard answers haven’t considered. I just typed in (Smoking and lung scarring) and this is what the computer “Co-pilot” sent back. I know a good number of people that smoked a lot and some have been long time living and still breathing. So all these stats say is that if we have smoked it puts us in a higher risk category of getting something we don’t want, but of course just because one did or does smoke doesn’t mean that’s an automatic condemnation. You should be able to get the same info and more detail by using the same search criteria as I did.You’re at least one of the lucky ones with strong genes or something. Here’s what I copied from Co-pilot:

    “Yes, smoking is related to lung fibrosis. Research has shown that smoking is a significant risk factor for the development of idiopathic pulmonary fibrosis (IPF). A meta-analysis found that smokers had a higher risk of developing IPF compared to non-smokers, with a pooled odds ratio indicating that smoking increases the risk of IPF<sup>1</sup>. Additionally, former smokers were shown to have a poorer prognosis compared to current smokers<sup>1</sup>.

    Smoking can cause inflammation in the lungs and increase mucus production, which can exacerbate pulmonary fibrosis symptoms and increase the risk of other serious conditions such as lung cancer, chronic obstructive pulmonary disease (COPD), and heart disease<sup>2</sup>. It is advised that individuals diagnosed with pulmonary fibrosis should stop smoking to prevent further damage to the lungs<sup>2</sup>.

    If you or someone you know is struggling with smoking and concerned about lung health, it’s important to seek help from healthcare professionals who can provide personalized advice and support for smoking cessation.

  • george-poulsen

    Member
    April 26, 2024 at 2:43 pm

    John, I just learned a new name (Mycophenolate) thanks and looks like a much much lower price than some other drugs in use too. It also looks like it has some pretty good objectives and results from what my uneducated mind makes from reading the Co-pilot response for my input of (Mycophenolate and lung scarring). This is what CO-pilot sent back on this drug and I find it very interesting from my own personal viewpoint. If its a (lot cheaper and stops the scarring) that would be extremely interesting to anyone! Do you get through VA or pharmacy and co-pay? and what strength? 500mg? Many side effects? I have looked at lots of alternatives and have refused all meds for my own reasons (and age) but this one is intriguing.

    Heres co-pilot result:

    “Copilot

    <cib-message animate=”” visible=”” type=”text” source=”bot” mode=”conversation” serp-slot=”none” product=”windows” density=”normal” table-version=”1″ indicator=”” katex-scroll=”” output-background=”” full-width=”” goldilocks-line-height=”” goldilocks-citation=”” goldilocks-attributions=”” goldilocks-message-actions=”” goldilocks-turn-counter=”” goldilocks-view-more=”” chat-type=”consumer” chat-state=”ok” attributions=”” finalized=””><cib-shared serp-slot=”none”>

    Mycophenolate, also known as mycophenolate mofetil (MMF), is an immunosuppressant drug that is used to treat a variety of conditions, including interstitial lung diseases (ILDs). ILDs can cause scarring in the lungs, inflammation, or a combination of both. If the ILD mainly causes inflammation, medications like mycophenolate may be prescribed to reduce the body’s immune response<sup>1</sup>1.

    Mycophenolate helps to control inflammation in the lungs and protects them from ongoing damage. While it may not improve symptoms such as breathlessness and cough immediately, it can prevent the development of permanent scarring or pulmonary fibrosis if the inflammation is left untreated<sup>2</sup>2. It’s important to note that the benefits of mycophenolate may take up to three months to become apparent, and regular monitoring through symptoms and lung function tests, as well as CT scans, may be necessary to assess the response to the medication<sup>2</sup>2.

    If you have concerns about lung scarring and are considering or currently taking mycophenolate, it’s crucial to discuss this with a healthcare provider who can provide personalized advice based on your medical history and current health status.”

    </cib-shared></cib-message>

  • Alex Marion

    Member
    April 26, 2024 at 4:19 pm

    George:

    One thing I also find out after reading several cases, That ipf is different than dipf, in its progression.

    Ipf been faster and unpredictable, dipf sometimes is slow or progression stops after withdrawal of the offending drug.

    This lead me to believe that my wife last lft improvement, may be do for this. In the other hand I do not know anything if ipf patient gets improvement in fvc fev1 and rv within 6 months in a 6 minutes walk.

    Please educate me.

    Alex

  • george-poulsen

    Member
    April 27, 2024 at 6:00 pm

    I’m sure not a professional but what you say makes some sense to me. If you can stop the offending item and you see improvement in the FVC measurements it sounds like a start that I would personally be glad to see in my own condition. I guess if it also had an impact on improving the DLCO measurements it would be a reason to maybe think very positively about what stopping the drug did for you. Have you seen a situation where a particular drug was stopped and you saw the FVC actually improve? Certainly it would be a reason to also have a long discussion with your prescribing doctor. You could always share that info here too.

  • Alex Marion

    Member
    April 27, 2024 at 10:33 pm

    George

    Please find the requested link. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3775203/

  • Alex Marion

    Member
    April 27, 2024 at 10:35 pm

    There are more related to nitrofurantoin, find some in Australia, many are fatal. But there are others with better results.

    Again, please let me know if improve in lft are natural.

  • Babe

    Member
    May 16, 2024 at 3:09 pm

    George, my original diagnosis was Hypersensitivity Pneumonitis – auto immune disease. Over the past 10 years IPF and Pulmonary Fibrosis have been added to the list. I have been on Ofev for some time and also take Mycophenolat 500mg – 2 tablets twice a day. Since it appears to be an auto immune disease I have continued taking this immunosuppressant. My doctor would prefer I take 3 tablets twice a day but I am small so changed to 2. You can do an internet search on Mycophenolat and it might help you decide. I go along with my doctors but had Covid over Christmas and have had a drastic change causing me to be on Oxygen 24 hours a day. I am also using an AirVo 2 humidifier hooked up to my two concentrators. This forces warm air into my body. While I think the Ofev and Mycophenolat are standard treatment I feel they are all they have to work with at the moment. Apparently there are trials on other forms of treatment that could well work better but they have not been released for general use. Now, I believe that exercise can help strengthen our lungs.

    These are simply my thoughts.

  • Linda Maguire

    Member
    May 16, 2024 at 3:13 pm

    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.

  • Millie

    Member
    May 16, 2024 at 8:52 pm

    I always loved dusting powder and Johnson’s Baby Powder. After showering, for years, I would dust it on my body, especially on my breasts. There was a lot of powder dust in the air and I probably breathed it in. It was full of asbestos. That is where I think I got my IPF. Has any other female done this over the years; i.e., used dusting powder on their body after showering?

  • Maria Donihoo

    Member
    May 19, 2024 at 4:13 pm

    Hello!

    I was diagnosed with IPF and I was wondering how many people who have this disease were taking Statins? Statins are dangerous. I have been doing a lot of research on statins and they cause so many other problems. I wonder if this drug is the cause of my IPF!

    Respectfully,

    Maria Donihoo

  • David Bennett

    Member
    May 21, 2024 at 4:16 pm

    Idiopathic means idiopathic! There are hundreds of things associated with IPF, but none meet the standard of causality. Genetics is a good example. A set of “marker genes” are more common in IPF patients than the non-IPF public. Many IPF patients do not have the genes. It is, therefore, associated rather than causal. Reasearch is ongoing, but it is extremely unlikely that a single causative factor will be identified or even exists. You can certainly pursue it as long as you like, but you are unlikely to find an answer.

    • george-poulsen

      Member
      May 22, 2024 at 1:35 pm

      David, I understand what you say but my thinking is that as long as someone says they don’t know, and they call it idiopathic, then it leaves an opening for me to still try to find what caused mine whether drug, viral, bacterial, environmental, etc? Seems like someone will at some point… right?

  • george-poulsen

    Member
    May 22, 2024 at 1:24 pm

    Maria… I take statins and have for many years and have questioned the same thing. But when I question it in Co-Pilot the response I get is very low chance but always a possible….. and check with a doctor.

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