My Naturalpath put me on NAC, Berberis, ACES with zinc and fish oil, along with 2 enzymes to help break down fibrin in the lungs. I also use a a perscription for glutathione which I use 3x week by nebulizing it. For my cough I use a St. Francis product called Respircare. It really helps me

She would like me to buy a machine called NanoVi to…

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I’m 81 and have had IPF diagnosis since May 2018. Opted out of Ofev and Esbriet. Got a diagnosis of Rheumatoid Arthritis (also, like IPF, and autoimmune disease) in June this year. Rheumatologist will be starting me on adatacet (Orencia) which is administered via an effusion process once per month very soon. Said it will benefit and…

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Is the trail of bi 1015550 continues recruiting ?

Is someone tryinh the bristol Mayer phase 3 ?

I was on Nerondomilast, Fibroneer Trial, from July 2023 until last month when it ended. I have been on the “real” drug, high dose, for two weeks. I have been experiencing diarrhea – sometimes bad, sometimes ok. I have taken Imodium which helps. The Trial doc says to just take a preventative 1/2 or whole Immodium in the morning. I also have…

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Jim, I, too, am anxiously waiting for news from Cleveland Clinic for the next phase when I will be getting the real drug, if not already. Best to you in your journey with IPF.

I have been in the Fibroneer study since June-July 2023. My FVC has stayed 69-70 and I am not on oxygen.. I also take Pirfenidone and have for several years I was diagnosed in July 2018. No side effects

since I have been taking the study drug or placebo.. I am looking forward to switching over to the drug soon, but no word yet from…

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It is good news that multiple trials in 2 or 3 are favorably advancing. I missed a couple of opportunities but Ofev seems to help a little for now + a bunch of supplements…

Stay well…

Steve

Hi to all:

Digging into more information, i found this article regarding bi1015550 , and it may be a complementary drug to the current treatments.

Exploring Nerandomilast’s Value in the Complex IPF Treatment Landscape

Author(s):

Hayden E. Klein

Martin Kolb, MD, PhD, discusses the challenges of treating idiopathic pulmonary fibrosis (IPF)…

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I too am in the Pliant trial. I also take Ofev. I was diagnosed in Oct 2023. I just had my 6 mo trial check up and there was NO change in pulmonary function tests or CT scan. This trial is still ongoing. My side effects are the same as with Ofev. At this point I’m very encouraged!

How can I get in the trial? Where is the study done?

Denny Eliassen

Is it too late to get into the trial? What is the name of the drug?

Denny Eliassen

It’s been a while Steve. Are you still taking serrapeptase and how much? Anything else working for you? Lignosis? NAC? Metformin? Give me a text back.

Denny Eliassen

I too am in a Clinical drug trial for a new IPF drug. It’s in Phase2b/3 at present and started in August 2023. Pliant Labs Inc is running it worldwide and is currently recruiting new participants. It is called the Beacon IPF trial and data so far is very positive. It is a double blind study. You have a 2 out of 3 chance of being on either the…

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I have been in this study for some time now

I don’t know if I am on placebo or the drug – but thank God my numbers are stable, and I don’t have any noticeable side effects

My docs think I probably am on the drug, and they think it’s going “red Label ” in October. That means the actual drug will now be given to all study participants…

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Hi,

Thank you for sharing the temporary outcome from the trial.

I also read that improve spo2, as per the testimony of another patient in the trial.

The diarrhea is consistent with the sideffects but It would be good to know if the patient are taking only bi 1015550 .

I think the phase 2 shows minimal sideffects on those patient compare…

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I am also in this trial and feel much the same as Donna except I did not lose 20#….more like 10. Started taking in July 2023 and felt pretty good but after I started my pill packet in December the diarrhea started and I don’t know what changed. I am also on generic Esbriet since June of 2022 and don’t know if that had something to do with the…

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Hi donna:

Finally someone who is in the trial.

Is my understanding that ,yes, you may be taking the drug not the placebo, because of the diarrhea, that for what I red, is the commun side effect.

As per phase 2 that only run for 12 weeks, they finding was fvc not going down, in fact, improve marginally, and spo2 normalized, as per one…

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Just realized that the drug number you mentioned in your discussion (BI 101 5550) is the one I’m on in a clinical trial! Don’t think the trial is actually over as I won’t be finished with mine until October. Not sure if I’m on the drug or a placebo, but I’ve lost 20 pounds and have had constant diarrhea (manageable) since I started the trial. …

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Hi.

Bi1015550 phase 3 trial ended en August. It looks that they have to gather all the data and satisfy the fda for final approval.

Apparently, for what I read , it has less side effects of the current drugs, and works at 60% stopping the progression in fact as per data of phase 2.

Bristol Mayer also in phase 3 with somewhat…

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Hi, someone has news about Nerandomilast, by Boehringer Ingelhiem?

Best. Max

I frequently experience painful bloating. I count it as one of the numerous challenges of being on OFEV. I am in an almost constant state of gastric distress, with the symptoms unpredictable and ever-changing: nausea, sometimes with vomiting; aversion to food, cramping, constipation, and bloating. I treat these ailments symptomatically as…

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Hi had diarrhoea while on Ofev, which I discontinued, and now constipation with Esbriet, with a lot of burping. I’m now taking a laxative which helps.

Cheers Mal

I had it last night. It’s very painful. I don’t know what caused it so I can’t blame Ofev. But I am suspicious.

Both OFEV and PIRFENIDONE have caused severe stomach/tummy bloating without any apparent gas or wind but no other symptoms.Have any other members experienced this ? Could both drugs be effecting the way the pancreas produces enzymes. ? Any thoughts would be appreciated. Thanks. Graham g. UK

I did not keep it but there was another recent article suggesting berberine may help IPF and again there are many types of PF that may or may not benefit from it. I have been taking it for BS but after the article, I increased my dose to 1800 mg per day from 1200mg. What helps most is diet – avoiding inflammatory food, lots of water,…

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Yes, plenty of brands selling berberine online. Just google it and even eBay or Amazon

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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Thank you David.

You comfirm the information from a friend with a medical contact.

I am looking at Berberina (?) The material recently featured on this site and the Chinese tests on mice. It is available on vitamin suppliers sites.

I’m at the grasping (gasping) at straws stage!

Thanks again,

Regards to all contributors, Joe

Once again, there are no validated scientific studies confirming any real value. Cumin is one of the few supplements with confirmed anti-inflammatory and anti-oxydent that might have some value for some patients if taken with the two traditional medications. It’s also a lot cheaper.

I have had an enquiry from a fellow sufferer about Linosus. Has anyone used this treatment? Any comments?

The link:-

Lignosus | Best Natural Respiratory Health Supplement

on__23853078900190174&utm_term=TOF | DCT | CBO | EU | 107…

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When i read about sarcatinib, i found that the trial is call, stop ipf. However, i cannot see any preliminary reports, and may take til 2026 for the medication to be available.

On the other hand BI 1015550 is on phase 3 and shows significant progresion reduction also may take another 3 to 4 year to hit the market? since i am new to all this,…

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Hi Ray:

I take Ofev. The price is $10,000-$12,000 per month. Fortunately, I qualify to get it free. Saracatinib costs about $28,000 per year. With RX insurance, the cost may be much lower. From what I’ve read, saracatinib reverses the scarring in the lungs. So, if approved, it could be a game changer for all of us.

Millie

I have been on OFEV since 2016 and the retail cost is not even near 28,000. More like 10,000 to 12,000.

Ray Dingman

It is currently in use to treat certain cancers. The annual price is in the $28,000 range. That is a lot better than Ofev.

They claim is better thatn Ofev, but the price is about three times what Ofev cost which is already very expenssive.

The start date of this study was Nov 12, 2020. the final phase is now recruiting participants until Dec 31st. The study is being done at Mount Sinai in New York City. This phase will be completed in June 2024. From that point, it takes 4-6 months to clean the data and prepare the primary manuscript. The results will be available end of…

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@jofac-ohandlin

Hi Joe,

I just posted a long answer here but it looks like it disappeared.  Please let me know if you can see it.  Otherwise, I will try to recreate it for you.

Stay well…
Steve

<p style=”text-align: left;”>Hi Steve, I missed the paper that you refer to, I only caught the study on mice that appeared on this site at the end of February (?). Is it the same paper or a different test. If different do you have a link.</p>
I have will have completed 3 weeks on my trial next Monday. Presently taking 75 mg coated tablets 3… Read more

@jofac-ohandlin

Hi Joe,

I’ve been taking baby aspirin enteric coated for a very long time.  After a white paper was published here sometime last year, I increased to 3 baby aspirin 2x with no noticeable side effects and I take many other supplements as well.

Stay well…
Steve