my wife has the same results. she does not walk as much but, she does a lot of house chores, and still run our businesess, does weight lifting 2 times a week and she lost some weight, she is very fit and like you very possitive . her pft has not change in 1 year and her spo2 actually improved, she takes no drugs only1 liter of mullain tea every day.

Hi : I found a few comments regarding the final results and in my opinion, it is as good as ofev but with less side effects. It keeps fvc a bit better, but we would only know after a few years.

https://www.fiercebiotech.com/biotech/not-game-changing-boehringers-phase-3-lung-data-get-muted-response-analysts…

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hi Mack: please read the final results https://www.fiercebiotech.com/biotech/not-game-changing-boehringers-phase-3-lung-data-get-muted-response-analysts.

hi Mike:

It is not as expected, but, it apparently it is better tolerated and slow the fvc a bit better.

i was hoping it would do better based on the phase 2 reports, as i m looking for anythig that works for may wife.

so far see is not taking anithing because she for some reason has been stable for almost 2 years. we base this succes…

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This is are the final findings of how the new drug work. Not as good as i whought but improved fvc and sideeffecMay 19, 2025

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<i data-save-icon=”icon” aria-hidden=”true”>Nerandomilast reduces FVC decline, has ‘manageable’ adverse events in IPF at 52 weeks

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Key takeaways:

• Two differing…

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Hi to all.

If anyone have information regarding :

Saracatinib trial phase 2b

Bristol myers: trial phase 3 on going.

INSILICO: Pase 2? Or is a phase 3 ? For some reason is cannot find new information.

Our Doctor, is recommending the Perfenidone inhaler trial.

Nerandomilast: Any success story would be greatly appreciated.

Alex

Hi Steve.

I have extensible reading about it and using ai for more comparable information.

As far as I now, it improve fvc in 12 weeks based on phase 2. Meaning it increases fvc +5.7 comparable with placebo- 87.

They claim to achieve fvc objectives of total change. They didn’t say anything about exacerbation or hospitalization.

By…

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Is the trail of bi 1015550 continues recruiting ?

Is someone tryinh the bristol Mayer phase 3 ?

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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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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Somthing more that looks possitive.

https://6abc.com/temple-lung-center-idiopathic-pulmonary-fibrosis-scar-tissue-breathe/13577878/

Hi Charlene

I think this will work, otherwise wouldn’t apply to fda .

I did ask s Dr, in Toronto general back in May this year, and they dodge the question with a maybe answer.

I also asked for the trial of Bristol Mayer drug, that fir what I read works better and minimum side effect. This trial still going till end 2025.

Because in 1…

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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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Apparently, it will be a new drug in the market with better results, in 2025/6

https://www.globenewswire.com/news-release/2024/09/16/2946446/0/en/Boehringer-s-nerandomilast-meets-primary-endpoint-in-pivotal-phase-III-FIBRONEER-IPF-study.html

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 she will be tested every 6 months with 6mw and see if there is any progression. Either is a very early ipf of pcpf because the fvc fev1 delco and rv all recorded above 8% improvement delco been the most from 56% to the last one in February atv84%. This been very optimistic, still asymptotic, but, honeycomb is there and that is the…

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Hi i4n

Our dr. Says ipf but, has doubts of covid pf. He wants to see some more pft before starting medication ad she is totally asymptotic.

So I think the only way to know for them is evidence of progression, is only about time, dangerous but only option so far.

Alex

Hi i4n

As far as I coul find out pcpf also shows uip and honeycomb in some case. The imaging overlaps, the is why is so difficult to detect ont to the other.

My wife was never intubated or in a hospital, she had a case that we deal with it at home.

Reading many articles, shows that 44% of people with covid will develop pcpf.but still do…

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Hi Lee

You are my hero. How is the Dr noble protocol doing for you? I only incorporated zinc for my wife, but, diet and exercise, and good rest is keeping her very healthy and asymptotic.

Like you 2 doctors suspected that a post covid fibrosis kicked some small one she had. The question now is about progression, as I pointed in another…

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Hi.

My wife has the same condition as per a second opinion Dr.

For what I understand it may be not progressive, but, not guaranteed, we monitoring via pft every 6 months, and her numbers slowly improve, now her fvc is 96% up from 84% last year.

She is having another lft in August and I will post the results. She is not taking antifibrotics…

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Thank you Charlene, and thanks for this forum where I had learned many different options on how to deal with this condition.

People like Steven Drago, Lee, Kim , etc had provided great information .

I also found that everyone has different outcomes and not always is 3 to 5 years, on fact, is more important to avoid irritants on daily…

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Hi Sheila:

Reading your post, add a lot of hope to many of us, IN particular a few point s you made :

1) BI 1015550 , I am interested in the trial results , i think still open and maybe able to a late enter.

2) Asymptomatic, this is a point of very much interest , due to your comment of patients that are asymptomatic

3) I do…

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Hi charlene :

I am caregiver for my wife that still asymptotic. She still do not want to start medication till next lft. So far the only thing she had helped a lot is a bit of walking, keeping a healthy weight, doing weight lifting 2 times a week, that has helped a lot. Having strong legs and core muscles, provides many benefits. She…

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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.

George

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

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…

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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…

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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…

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Hi George.

My wife have ipf but it could also be dipf or covid pf. She was diagnosed last may and she still asymptotic, she started caughting in October but quickly git better with more water humidifier and manuka honey in the morning and night. Went for a second opinion to ecuador and she never cough outside in the worm humid weather. …

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Hi Kim:

I know you take ofev along with haritaki, and i am reading that you got excellent resluts in your last lft, and hrct. My question is, how mucht do you atribiute haritaki to your exceptional progress, compared, to your diet excersise and ofev. I m a caregiver to my wife, and so far she is 100% symptoms free and with the …

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Hi Larry:

Today we had an appointment with my wife (74 and in great health) with the pulmonologyst, after having a 2nd spirometry in 6 months, and the numbers had somewhat improved, FVC went for 89% to 96% but, DLCO went down 58% to 46% , however the dr, seems more concern of the possitive fvc numbers, for him that is important.

As…

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hi;

Yes, i think by june /july phase 2a will be finished, and resluts by year end, more than one person is expecting this to be succesfull, as per some results are very promesing. It is the long term effect and the age of the patinet that may be a concern as per many other cancer drugs, there are very invasive, \the other one is bi 1015550…

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As per I found so far with A I.

There is currently no scientific evidence supporting the use of inhaled apple cider vinegar as a nebulizer treatment for IPF or any other lung condition. In fact, inhaling apple cider vinegar is potentially dangerous and can have serious health consequences:

<ul data-sourcepos=”3:1-3:22″>

Lung irritation: The…

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Hi: my wife started with some coughing a few months ago, and it was progressing, till i read about some Manuka Honey, we bougth a jar at costco and , she star taking 1/2 a teaspoon in the morning and 1/2 at nigth. so far is working well , reduced the cough by 80% as long as she does not get anxiaty.

Hi Kim:

The site you provided has a lot of information, thank you very much for sharing. I also find that if the case

this is the reason of the IPF, it may be stoped providing you stop the medicine, at this point and if is corroborated by the Dctors, it may be called

Drug induced pulmonary fibrosis. Not reverseval but may…

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My wife took it for 10 years as a prophilactic, and she was diagnosed this year with IPF, After a lot of reading, she soped in August this year, before a LFT, we have another one in January, and aftr the results i will follow up with the respirologist .

Hi Charlene:

I am very lost, and feeling living in an altertaive reality, since my wife got diagnosed in May this year. the 3 to 5 years, is kind of wht i can see everywere, unless lung transplantation makes it in to the equation. Only 40% of patientes responds well to Ofev, or Esbriet, that is a lot better than 20 years ago,…

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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 Mario:

I is wanderfull to read your story, i hope my wife will tolerate the medication, as because she is asymptomatic, she had decided to wait and see strategy, that , in my point of view is wrong.

As supplemt she is taking zinc and curcuming for now, she try nac, but her cough was too much for her to handeled, and quit. …

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Hi to all:

This is my kind of fisrt post, since i found this wonderfull forum, expresing differnt experiences in the dark tunnel of this ugly desase ( for now)

My healthy and wondrful wife ,my love of 43 years, was reacently diagnosed , she is very healty otherwise and living 100% without symptoms, I think, is because, the…

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