Very interesting recent article in Wired Magazine about AI enhanced drug development, including a little about a drug for IPF – ISM001-055 is for idiopathic pulmonary fibrosis, one of two new drugs where AI played a large role in getting it through a Phase 2 clinical trial. Hopefully this and other new drugs will continue to be advanced…

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THC is a potential contraindication when taking a medication that prohibits eating grapefruit. Both grapefruit and THC can interfere with the same liver enzymes responsible for metabolizing certain drugs, which can lead to dangerously high or low drug levels in your body. [1, 2, 3, 4, 5]

How the interaction works

The key to understanding…

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My pulmonologist was ok with gummies and tincture but specifically warned again smoking in any form. I take a mild dose, 1/3 of a 10mg gummy or about 2mg of a tincture with Delta9 thc. usually take it once in the morning and again at night before bed. I get a mild buzz from it, which I like as it enhances my mood, makes me more productive…

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I’ve been using ChatGPT regularily since I was first diagnosed over a year ago. It has helped me enormously to understand the disease and to cope with it. I’ve also used it to help me with different PT exercises for my knee arthritis and a million other questions about a variety of topics. On occasion, it may say something questionable but…

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I don’t know if age can be a factor with how likely your husband will experience side effects but the GI side effects seems to vary quite a bit depending on the person. The first several months I took Ofev (100mg) I hardly had any problems except for some constipation (which I’ve always been prone to) fairly easily solved with increased…

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John, what samuel-kirton is saying is totally correct. I also suggest you find a high quality pulse oximeter, especially one that does well measuring with activity. I use the Masimo MightySat oximeter. It is essentially the same as the medical-grade ones used in the hospital and seems to work well with exercise. It also connect via bluetooth to…

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I have IPF and use an Inogen One g5 for exercise and it often isn’t enough for my needs when I do more strenuous exercise. Walking up a steep hill with the setting at 5 often can’t get my SpO2 above 89. I have been told by a pulmonologist that to do this safely I should use one of the smaller lightweight tanks (M6 cylinder tank) for hiking…

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It is recommended to keep your O2 sats (SpO2) at least above 90, preferably above 94 if you can at all times. This is prevent problems with your organs not getting enough oxygen, especially your heart and brain. One fairly common problem with people who have had PF for a time is getting Pulmonary Hypertension which is often caused by…

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I have IPF and found out my O2 sat dropped to the mid-80s at 6500 while on a vacation in the mountains here in California. My pulmonologist ordered a High Altitude Simulation Test which proved I needed oxygen when flying or at high altitudes. This lead to my getting a Treadmill Oximeter Stress Test which showed I needed O2 with exercise.…

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I’ve found several NIH articles over the years discussing small studies that suggest a particular treatment may have some benefits with the treatment of PF or IPF. My pulmonologist cautioned that while these studies and papers may sound promising, until larger studies and clinical trials are done, that it isn’t something to take much stock in.…

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At first I thought seeking a Lung Transplant would seem wise even though I’m 71, however my pulmonologist said that since my disease isn’t yet that advanced, I’m likely to live for several years before I was sick enough to qualify for a transplant but if I worsened rapidly we could consider it at one of the centers that take on older…

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Sorry to read about your situation with Ofev and perforated bowel, sounds dreaful – I hope you recover well and will be able to tolerate Esbriet. I was curious so I asked ChatGPT about this –
this is what it said,

Gastrointestinal perforation, or a tear in the stomach or intestinal wall, is a rare but serious side effect associated with…

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Sorry to read about how much your cough is limiting you and all. I’m surprised that you don’t have a specific type of PF diagnosed yet. Have you seen a ILD Center of Excellence pulmonologist yet? Or see someone who has expertise with ILD? You likely know how important it is for them to figure that out.

Hi Bessey,

Sorry to read about your situation. I have an Apple Watch that I’m able to check my SpO2 during sleep – it occasionally has given a reading in the 80s but the vast majority of the time it remains in the mid-90s. I had an overnight oximeter test from the pulmonologist a several months ago that was a normal reading. My Apple…

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Thanks, everyone, for your comments and suggestions; much to take in. I spoke with my pulmonologist today and he agreed the pulmonary rehab would be helpful, especially since I will now require O2 with exercise. I will be getting a home and portable O2 concentrator next week.
I don’t have pulmonary hypertension yet, as far as I know – I did have…

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Very sorry to hear about your situation, the not knowing what’s happening can be very stressful. Are you seeing a pulmonologist? The fact they ordered a CT scan is good. Of course, speaking to your pulmonologist is best but in the mean time you might consider putting the results of your CT scan (in Italian) into ChatGPT 4o or Claude AI and ask…

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good suggestion, I’m going to try that. Also, taking a fiber supplement like Metamucil capsules might help as well.

When I was first diagnosed with IPF in Feb ’24, my pulmonologist stressed the importance of cardiovascular exercise, that it was as crucial as the anti-fibrotic. He said that I was in a very early stage of the disease and with careful management, could live for many years. I recently told him about feeling very short of breath with very…

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Thank you for your help with this great site and look forward to your moderation and keeping us all safe from spam and fanatics!

I always eat lots of protein with both my AM and PM 150mg dose – however doesn’t seem to stop the GI problems. But, maybe it would be even worse without my generous portions of protein. For a few months after first starting Ofev, I mainly had constipation with 100mg but when it was increased to 150 I started having diarrhea regularly but…

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I’ve been on Ofev for 6 months now and have only experienced constipation that I’ve kept under control. Recently, when the dose was increased to 150mg, I started to get occasional diarrhea, but so far only when I’ve eaten something that was problematic in some way. I worry a little that I need to be more careful with what I eat. (don’t…

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With the declining DLCO numbers, that you have the UIP with honeycombing and the ILD diagnosis, I’m surprised that you’re not already on an anti-fibrotic or have a diagnosis of IPF. The actual cause (from your military exposures) is probably difficult to determine. Of course, I’m not a doctor or anything – but that your CT scans (I assume)…

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I’ve been on Ofev for over two months now with no significant side effects except occasional constipation. From what I’ve read, people with significant side effects tend to be in the minority. I don’t yet have any major symptoms from my IPF and was lucky to find I had this disease early on from a CT scan done for something else. At first…

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(a condensed version of what ChatGPT 4o gave me) ‘There is a lengthy review process after Phase 3 completion that can take several months or longer. For a drug to become available – it typically ranges from 1 to 2 years, depending on a number of regulatory considerations by the FDA and other review processes. For drugs that qualify for…

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So, I saw my pulmonologist today and I came clean about my CBD use. I was surprised that he was ok with it and even said that he had a few other patients who used it without problems. He didn’t think the concern about the liver enzymes and Ofev was worrisome enough to prevent the CBD use – (although he didn’t say this – I’m assuming this would…

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When I first started taking Ofev (100mg) about 3 months ago, I was told by the Pharmacist to avoid eating grapefruit, I was also told this when I started taking a statin (Crestor) a month later. I asked the pharmacist if taking CBD oil would pose a problem, and he said there haven’t been enough studies to say one way or the other.

I had…

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Thank you all for your helpful comments. I hadn’t checked in here in awhile so missed these new comments until now. I’m seeing another pulmonologist at a center of excellence here in San Diego for a second opinion next week despite having had an official diagnosis for a couple of months or so – and have been taking Ofev for about as long.…

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https://www.verywellhealth.com/foods-to-avoid-when-you-have-diarrhea-1944667

I started on Ofev 100mg almost a month ago. So far no problems at all. My appetite is normal, I eat pretty much anything, especially very hot spicy foods (have done past 40 years or so) love ghost peppers and Reapers! I eat lots of fruits, yogurt, salads as well as drinking lots of coffee. Nothing yet seems to be a problem.

I was worried a…

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A great podcast (that is transcribed if you rather read) on future developments in the treatment of IPF. https://www.medscape.com/viewarticle/982426?fbclid=IwAR1NK9imq6VDEq6zJtQuiELLiWzybXlUc7fUbhqJdyypwarp3gNafVOWYac

Maria, For some people a Keto-type or carnivore diet might help their weight loss and inflammation but I’ve never read anything about it helping something like IPF – a totally different disease process. You may already know this but it’s dangerous to take advice about treating your disease from someone who isn’t your pulmonologist. Currently…

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If you go to the PF Warriors website and join (free) they have a section under the videos of past webinars. One of these videos has an hour and half talk by Dr. Paul Noble about his Zinc/NAD+/Resveratrol regime. Very informative and worthwhile talk. However, he repeatedly makes it clear that with no clinical trials and such there’s no real way…

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My pulmonologist ordered a nocturnal oximeter device for me to wear overnight. It pretty much correlated with my apple watch – showing that it dipped down to 89 briefly a couple of times during the night. However, overall the o2 sats were all normal through the night. The test overall was considered normal. So, I’m guessing that having the o2…

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I think that’s pretty common to get errors in manual apple watch readings. I sometimes want to see what my o2 sat is after strenuous exercise (like bike riding uphill) very difficult to get a reading but if i sit and put my wrist on a flat surface it usually works – trouble is that by then I’m already less out of breath.

I just looked into the Fibresolve AI more and on their website it says ” Supporting Skilled Clinicians:

The results of Fibresolve are intended to be used only by clinicians qualified in the care of lung disease, specifically in caring for patients with ILD, in conjunction with the patient’s clinical history, symptoms, and other diagnostic tests,…

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Thanks Claire, I agree! Below I posted both my pulmonologist’s and radiologist’s findings – it is hard for me to tell from their findings on how different they are from each other. The repeat scan should shed more light I imagine. I may take it for a second opinion – where they might have a multi-disciplinary discussion (commonly done for…

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Thank you George for you post, glad to hear you’ve had numerous years and hope you get many more. To tell you the truth, I didn’t even consider getting the AI to read it on my own, great idea – IF it doesn’t cost me a fortune, sadly I’m not sure I could afford even what they might think is very reasonable – I may have to wait for it to…

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So, with all this info – what am I to think is the best course? I’d like to think that doing nothing but follow up over time with repeat HRCT and PFTs is a wise course of action – I’d rather not take the anti-fibrotics unless it clearly benefits me – and it sounds like there could be controversy here. However, I certainly don’t want to put…

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Here is what my pulmonologist wrote in his notes:

# Interstitial lung disease, with some features of UIP but also somewhat atypical in the focality of the degree of honeycombing. No clear exposures or risk factors. Basic CTD workup is negative. He is asymptomatic with normal PFTs at this point. He does have a potential family history of IPF.

Here…

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Thank you everyone for your thoughtful comments. Here is a link to a fairly recent NIH article/Study about IPF that addresses, in part, to my situation with early, accidental findings of PF that helped me a lot to possibly see my pulmonologist’s thinking in my situation with regard to making the diagnosis of IPF vs. his current diagnosis…

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Thanks for your good suggestion. It is interesting to hear about the issues around IPF diagnosis in the UK. I’m pretty sure my diagnosis of PF is based on my last HRCT that was done last September (for something else – so my PF finding was by accident) All the other possibilities seemed to be ruled out (CTD, toxins, etc) and the pattern on the…

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Is asking your pulmonologist to consider using this new AI for reading and diagnosing IPF from a CT scan (article on the news/home page of this site) a good idea? I haven’t yet been given an official diagnosis yet but MD suspects I have IPF and have a repeat CT scan coming up in a few weeks. After reading this article I am considering asking…

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NAC isn’t the same thing as NAD https://www.webmd.com/vitamins/ai/ingredientmono-1018/n-acetyl-cysteine-nac from reading this webmd article, it sounds like something that would be best taken with caution and under MD supervision – a lot of drug interactions and such.

I agree, the acidic nature of the vinegar seems very risky.

In case you didn’t see this in the news recently… To be on the safe side I disabled the automatic update for my Apple Watch Series 8. https://www.engadget.com/apple-will-remove-blood-oxygen-app-from-watch-series-9-and-ultra-2-to-evade-us-import-ban-194517839.html

I don’t think there is any clear evidence that taking NAD will help significantly or at all – but I think that as long as I just take the recommended dose, it won’t do any harm. Even a slight chance of helping to slow or stop the progression is worth it to me (even though the brand I take is somewhat expensive) I get mine from Amazon and…

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Thank you for writing such a detailed story about your situation with Covid and PF. I hope the best for you. I particually relate to what you said about “My wife thinks I shouldn’t dwell on it and this makes me miserable but I cant stop reading and researching about this. Is my life going to be shortened? Will I eventually need a lung…

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My understanding is that this ruling shouldn’t affect any watch already sold – only the ones in the Apple store and maybe other stores too eventually. I think we’ll be ok.

I’ve been trying to find out more about the status of Saracatinib and didn’t see much new information regarding how long it might take before the results of the clinical trials are known. However, I did find this link that has a fair amount of layperson-readable (to a degree) information (as well as another drug) that Might be helpful…

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carl-stidsen, From what I understand – If you have a medicare plan D coverage (or something similar with a medicare advantage plan) they should pay for most of the coverage for Ofev. I don’t yet take this but I asked my Medicare person and they said I would only be responsible for a little less than 3K per year for Ofev and that Medicare… Read more