[Alex Marion]

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 bases maintaining a good lung helth.

Lee is one of the best examples in how maintaining a good exercise rutine changes your quality of life. My wife had a 9% improvement in 6 months with excersize regime, good sleep, and stress control. All are keys to keep the progression at bay, even the pulmonologist do not recomend to start medication till necessary, maybe a mistake, but they know better, as she still totally asymptotic.

[Alex Marion]

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 sleeps fine and now, a lot better since she started with haritaki pill about a month ago. She also drink a lot of water and have humidifier in every room she is.

There supposed to be a lot of medication coming out , we do not know when.

Alex

[Alex Marion]

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.

[Alex Marion]

George

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

ncbi.nlm.nih.gov

Reversible interstitial lung disease with prolonged use of nitrofurantoin: Do the benefits outweigh the risks?

We describe the case summary of a 70-year-old man diagnosed with interstitial lung disease due to prolonged nitrofurantoin therapy. Despite honeycombing confirmed by computed tomography of the thorax, symptoms and radiographic findings disappeared within ...

[Alex Marion]

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

[Alex Marion]

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.

[Alex Marion]

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]

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. The Dr. There consider that she is on very early stages an suggested tevago as he encounter positive results in some patients there. He has writing paper on covid related fibrosis and think that is the cause

We have a 3rd option on the go next week at Toronto General and see what they have say. The only thing we know so far is that her first lft numbers in August were 89% fvc and the latest one in February 96% fvc. Very good news as she still asymptotic and very active with weight lifting and walking.

[Alex Marion]

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 that has show reduction of 68% of the progression, then i think phase 3 of another drug from \bristal mayer /squibb will start soon. probably by 2025\6 we will have new more potent drugs with less side effects. for now i work with manuka honey and tyvago

[Alex Marion]

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″>

[Alex Marion]

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.

[Alex Marion]

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 .

[Alex Marion]

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, if some one cares to correct me , it will be aprecaited.

https://pubmed.ncbi.nlm.nih.gov/36693635/

pubmed.ncbi.nlm.nih.gov

BI 1015550: an investigational phosphodiesterase 4B (PDE4B) inhibitor for lung function decline in idiopathic pulmonary fibrosis (IPF) - PubMed

Oral treatment with BI 1015550 was shown to stabilize lung function as compared to placebo over 12 weeks, both among patients with and without background antifibrotic use, with an acceptable safety profile in a phase 2 trial, and a phase … Continue reading

[Alex Marion]

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 desease is progresing slowly.

She did have a LFT that indicate some lung anormalities FVC 80% and DELCO 55% ,but, she is able to walk all day doing all house chores,work 8hours a day, clean, and time for gardening, She also excersise 5 times a week 3 of them with weight lifting. As you cans ee, the picture perfect wife!!!!!!! we also work toghether in our business for the last 38 years, the simbioses we have is second to non.

I still so upset, that my only refuge is to come here on daily bases to educate and find confort with great succes stories, leke Steve Drago, Charlene, DR.Don, Lee Forge , and many that offer so much information for people like us that are transiting this ugly path.

Our Pulmonologies, say not to worry because, it is mild or even slow progeresion, but, as I reaseched ,this is totally umpredictible, and deadly for some people. He offer us the 2 anifibrotics , but my wife say that she prefer not to have them yet, till the second LFT schedule in 5 months to see the rate of decline. I opted to find a second opinion, and I am awaiting he call from a Toronto Hospital then , I think with a all the info she/we will make desicions.

I have read a lot and i came down thith 3 options going forward, and I would like to share with you all, as I belive on the wisdom of the craud.

1) Wait and see, keeping our helty way of living as all IPF information boards indicate. ( pleanty of water, good diet, pleanty of excersie, and mainfullness )

2 ) Start asap the antyfibrtic, that has shown reduces the speed of this sickness and continue with the above, life style

3) do all of the above and start the process of lung transplant.

.I know her age is a mayor factor for a negative prognosis but her almost perfect picture helth may play a roll, also er devotion to God who she visit every sunday.

My last thought is that there are many ongoing medicine trial on the pipeline, like BI 1015550 , Sarcatinib, the Insilico , and many more that needs just time to bring better treatment options. perhaps in the next 5 years providing we can all make it, the conversation topic would be about, what is going to be the menue for the next meetin.

God bless you all .

[Alex Marion]

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 believe exercise, in particular weight training is paramount in the condition, as well as the diet ,and maintaining a god bmi , your are another living proof of it.

4) there are other trials for new medication in the pipelines, but still some time ahead, apparently, you had a conversation with the researchers, and, if you could expand on it we will really appreciate.

Best regards

Alex

[Alex Marion]

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 help of some manuka honey she got a lot better with some irregular coughing, more related to asthma than her IPF. i gould like to introduce her into haritaki as well as green tea extract,as she refuses to start with ofev, as her doctor considers it is way to early to start due to her recent early diagnosis.

thank you

[Alex Marion]

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 you my wife got covid in2022 and took about 5 months to recover, but was a trip to a 5000mts city were we suspected something because she could not bread . we blamed to altitude but, once at home our family dr dicover a larger fibrotic in her lungs and refer her to a pneumonologyst, that he start investigating the cause, at first he say ipf, but after for a second oppinion, another dr, say that she may have some fibrosis before and covid kicked forward, as some of the previus writers. she still totally asymptomatic and excersising with heavy leg press and body work 2 times a week for 45 minutes, and walking about 6000 steps a day, drinking a lot of water, mataining humidity haigh in the house and the office, as we found the cough almos desapear in humind enviorement.

she also takes manuka hony and zink, and next week she will start green tea extract tyavigo as prescribed by the second pumonologyst as he is treaten some patients with it, as they cannot tolerate the regular ofev or esbriet.

i have been reading like you , a lot, enless hours as i still in desbelif , also with phsycological help, as my wife is my world, and try to do the best to keep her from declining, maybe she will not from this as her numbers are improving a bit.

good luck and keep posting your finds , as more new madicine will be available .

[Alex Marion]

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 stop progresing, as the medication stop and will not produce any more damage.

[Alex Marion]

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, and looking at the new research and possible new medication, makes me fearfull and hopefull at the same time.

Fortunatly my sweet heart still 100% emotionly and physically, enjoing every day like her last, as she says all the time, i wish i could do that. I spend endless hours resarching and looking for options, but, i am running out of literature to read.

I request a second oppinion since she got covid in 2022 and pneumonia in feb 2023 , but the dr. is convinced is IPF, here in canada I asked for a second opinion at Toronto Central Hospital, but they are telling me 10 to 12 months; so, more anxiety for me.

This forum is so far my only connection with people that i can share, since, i find many ideas and concepts that i can explore. One thing that still puzzle me is the progresion,and, since she is almost asymptomatic ( she seldom cough during the day) and does have a healthy life style including dayly excersise, work, and house chores, also enjoing the grand kids , really put a smile on her that brings life to everyone arround her.

Our dr, send us for a PFT an 6mw last august and her numbers aparently were excelent, FVC 80% and Delco 55% , he recomended the anifibrotics, but, say it may be to early, he want to do another 6mw and PFT in January and revisit in februeary.

He also say somenthing about lung transplant but is to early , and , due to her age 74, it may not qualify when the times comes, that, really makes me angry, I fell discriminated by age, and not by what Dr. should do that is consider bilogical age not numerical age. I have other alternatives, of going abroad maybe USA and get other oppinion? is there any advise can you point me to, to seek another alternative.

I read many people here living way pass the 5 years and without the need of oxigen, medicine and with GOD on their side.

Alex

[Alex Marion]

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. She sitll lifing weights and walking everyday, plus house chres, and a great feeling of been watched by God.

Be well