Looking for answers

[Maureen]

I am on this crazy road of diagnosis. My GP said all signs are looking like PF. My respiralogist says my ERV at 16% is due to abdominal fat pressing on my diaphragm ( like a pregnant woman). She says the person who interrupted my breathing test used the wrong word when he wrote ” severely  reduced 0.16L” so now I have to wait for a 2nd CT scan in January to confirm the diagnosis ( or not)

I am 5’3″ & weigh 155. She body shamed me so much that I will lose weight before my next scan.

I am wondering how others were diagnosed. Does it take a year because the scans are a year apart?

This is a great group! Glad I found it.

[sherman jones]

I would like to know when a person diagnosed with IPF should start taking an anti-fibrotic. My respirologist pushed the weight issue as the cause of my shortness of breathe and I know that contributes but I don’t think that alone accounts for all my symptoms. When I go to the gym lifting weights cause minimal stress on breathing but walking is tough. I think that if Ofev retards the progression of the disease it would make sense to use it in the early stages. Any comments?

 

[Donald Salzberg MD]

Hello. My name is Don. I’m sorry we are all going through this. IPF and other PF’s affect each of us differently. I’m an Ophthalmologist but not here to play Pulmonologist!!

The PFTs are affected by weight gains as FVC (forced vital capacity) is reduced when the lungs can’t expand. I could lose a few but shane on anyone body shaming. Maureen—A high definition CT (HDCT) scan will show the fibrosis but will not always differentiate the type of PF (pulmonary fibrosis) you might have. HDCT is used to follow progression.
When there was a question of IPF vs HP (hypersensitivity Pneumonitis) in my case I pushed my pulmonologist to have a VATS (open lung biopsy)!!!  Treatment of IPF vs HP and other stuff is very different. What person begs for an open lung biopsy/chest tube?  I pushed for it as I knew the sooner I got on an antifibrotic (OFEV or Esbriet) the more likely I will progress more slowly. To my knowledge it makes sense to get on it as long as it’s tolerated. I’ve had zero progression in the 3 years on it!!

As for GERD (gastric reflux) the IPF guru physician Ganesh feels strongly GERD exacerbates (??causes??) IPF as the reflux settles at the base of the lungs when sleeping ( early on IPF pathology is at the bases). He did a study on doing fundoplication to surgically eliminate GERD but apparently it wasn’t the answer. He is a big proponent of taking PPIs (proton pump inhibitors like Omeprazole/Prevacid) twice a day. I sleep a bit elevated as opposed to lying flat. Alcohol does increase reflux!!

We have to advocate for ourselves. If I hadn’t pushed to know what I have or don’t have—who knows. Also as an aside I’ve had some diarrhea issues from OFEV. A close friend of mine who does Energy Medicine (and being an MD makes me very skeptical of a lot of non-Western medicine) has helped reduce the frequency of my side effects a lot by doing some simple energy work/exercises.

Heartburn is certainly a symptom of GERD but not always. I also have sleep apnea (mild) and using a CPAP Device (if needed) is critical. It’s easy now to have a home kit to be tested at home (no more sleep studies in the hospital)!!!!

[David Skaer]

Acid reflux does cause a great deal of coughing as your body tries to handle that ‘burn’ in the throat. Thus, taking something that reduces reflux should help the coughing caused by it. On the other hand, I find that taking vinegar reduces my reflux. Confusing, eh? Taking something as acidic as vinegar can reduce reflux. There’s a good reason why increasing stomach acid is helpful. Check out the book, Stomach Acid is Good for You by Dr. Wright. A real eye-opener. I never take acid inhibitors anymore.

[john styles]

The article from June 25 published on this web site looked at the role played by esopremazole with lung enzymes.  Its more then treating acid reflex, apparently you can take the acid reflex out of the question of lung disease and look at what esopremazole does for lung health. That is why I read the article again. Hope there is something to this article.

[Bill S]

Hello Group,

This Forum is so calming, knowing we share so many common concerns. Is there an established published protocol that the pulmonology world follows for treating IPF?  Are annual CT Scans adequate for following progression?  How frequent should blood work be done for liver status monitoring?  I still enjoy my martinis.  Should one take Nexium or Prilosec once or twice/day?  Has there been any reported acute exacerbations while taking Ofev or Esbriet? How often should a 6 minute walk be administered?

I am 75 and was Dx’ed 09/2020 and started on 100 mg Ofev 01/21 with no issues.  Started 150 mg subsequently and have an occasional  predictable day of diareaha with no nausea that one dose of Imodium  handles.  I have never suffered from GERDS symptoms in my life and I don’t cough. My only complaint is excessive flatulence.  I have an oximeter that reports 98-99, but at rest.  I plan to take a 6 minute walk around a neighborhood track, rather than back and forth.  Will that be legit? I sleep with my head and thorax elevated 5-10 degrees.

 

I am also recently involved with an acupuncturist and her herbal powder formula.  I have asked her for the ingredients so I can compare her formula to Wei Institutes Soups A and B with the LC balancer.  I do wish East and West medicines  would speak to each other.  I am skeptical for the lack of scientific evidence the East publishes, but I am throwing everything at my disposal to combat this diagnosis.

[Bernard McKenna]

Hi John and Everyone

Yes I was so excited by news about Esomeprazole that I rushed to the pharmacist in Galway, Ireland where I was on holiday from England and got some.  The pharmacist sold it to me under the brand name Nexium and I am taking 20mg twice a day.  Our local pharmacist in Oxford even sells it cheaper in their own brand range but it is not expensive and can be bought over the counter without a medical prescription.

I have only been taking it since the end of June 2021 and therefore it is too early to notice any improvement but I am maintaining hope that there will be a cure for IPF in my lifetime that I will benefit from.

I was diagnosed in March 2018 and have been on OFEV (Nintedanib) since November 2018 but my FVC has gone down over time from a high of 72 to 60.5 and at 61 years old still working full-time.

God bless you all

Bernard

[john styles]

I am also taking Nexium ( made in France ) twice a day 20mg, tried generic Esopremazole from Costco ( made in Israel ) and it gave me a headache. I googled the article from Baylor university in Texas and it has more information but basically the same thing reported here on this website.  I would not expect to see any study’s on this because its over the counter medication and no money for research returns.  Hoping it works, I have has had usual intestial pneumonia for 5 years.

[morton campbell]

GM E1

after checking with my physician, i tried using omezparole 20mg twice a day and it really seems to help my coughing about 70-80% reduction.   ( :

[morton campbell]

i also have had good luck with esomezparole’s relative omeparezole (prilosec) in controlling my cough. What does the acronym sats stand for?

[Bernard McKenna]

Hi Everyone

Further to my post on 13th July 2021 I can now confirm that Esomeprazole  is working well for me.  My coughing is at least down 80%, I have renewed energy and can walk 2 miles and more without getting breathless.   I could not do this 4 weeks ago before I started taking Esomeprazole.   I can even tolerate foods that before I was reluctant to eat and my nausea and upset stomach that I had occasionally from taking Nintedanib (Ofev) 150mg twice daily has disappeared.  I increased my dosage of Esomeprazole to 20mg x 3 from 20mg x 2 a day but am going to try 4 x 20mg a day after now reading the study report from Baylor University in Texas.  The link to which is https://journal-inflammation.biomedcentral.com/articles/10.1186/s12950-021-00284-6

Whilst the report is technical the conclusion at the end is what is important.

[Linda Maguire]

Upon being diagnosed with IPF 5 1/2 years ago, my pulmonologist sent me for numerous tests to rule out auto immune diseases, GERD, etc.  Much to my surprise, I was diagnosed with GERD, which was “silent” (no outward symptoms).  Since then, I have been on Prilosec 20 mg twice daily, which has helped my cough & throat clearing, as well as possibly stabilizing my fibrosis.  I would be cautious about high doses without an MD prescribing & monitoring, however, as there can be some serious side effects from PPI’s over time & at higher doses.

[Linda Maguire]

Upon being diagnosed with IPF 5 1/2 years ago, my pulmonologist sent me for numerous tests to rule out auto immune diseases, GERD, etc.  Much to my surprise, I was diagnosed with GERD, which was “silent” (no outward symptoms).  Since then, I have been on Prilosec 20 mg twice daily, which has helped my cough & throat clearing, as well as possibly stabilizing my fibrosis.  I would be cautious about high doses without an MD prescribing & monitoring, however, as there can be some serious side effects from PPI’s over time & at higher doses.

[Jim Fitzgerald]

I assume “sats” is short for Oxygen Saturation in blood percentage.  You can purchase an Oxygen Saturation meter at your pharmacy.  Hope this helps.

 

[Bill Kelly]

John
Does “sats increase by 2pts” mean eg 88% to 90% blood oxygen?

Bill

[Bernard McKenna]

Linda I do not have GERD and am taking Esomeprazole for its anti-fibrotic effect.  The report from Baylor University states at its conclusion;

‘Accordingly, the dose of esomeprazole and other PPIs need to be adjusted to achieve plasma concentration of 50–100 μM in order to reliably regulate processes involved in lung remodeling. The standard antacid doses of PPIs only achieve plasma drug concentrations of 10–20 μM. However, higher doses of PPIs that can achieve antifibrotic concentrations can safely be administered to patients’. 

The report focuses on the benefits of Esomeprozole not any other PPI.

All I am saying is that it works for me I feel better now than I have done for at least the last year.

[Bernard McKenna]

Further to my earlier postings the report on the use of Esomeprazole is from Baylor College of Medicine, Houston, Texas.

[Denis Ryan]

Hi All,
I am somewhat confused.
I am a user of OFEV for IPF with 100 mg capsules twice daily. I was reading the Boehringer Ingelheim package leaflet that comes with the capsules and I noticed that under the item 1, the phrase “OFEV helps to reduce scarring and stiffening of the lungs”, mentioned under the heading “What OFEV is and what it is used for”.
This statement seems at odds with what my lung consultant advises as his opinion is that OFEV cannot reduce the scarring but instead, at best, only stabilises the growth of this IPF lung disease, as it is medically accepted as a terminal disease.
Surely, Boehringer have a duty to patients to amend the above phrase in their leaflet to reflect the true, correct and honest position?
Your views and opinions would be most welcome.

[Donald Salzberg MD]

Dennis & Others

There is a lot of confusion out there regarding antifibrotic medication. I have been on OFEV 150 mg bid (2x a day). The studies showed that the incidence of AE (acute exacerbations) is reduced on OFEV and Esbriet. They do not reduce the fibrosis (lung scarring) already present so almost never does the drug improve lung function or eliminate fibrosis. An improved pulmonary function tests on a subsequent visit is usually  due to weight loss or you were not well on previous PFT (eg had a viral illness). To my knowledge OFEV doesn’t make you better. I have read about a variety of Phase 2 trials that are showing/suggesting a potential reduction of fibrosis (mice)!

I have been on Omeprazole for years along with CPAP for mild sleep apnea. The guru physician Ganesh is a huge advocate for reduction of stomach acids. He feels it plays a huge role in cause abs worsening of IPF and other ILDs. I agree. A variety of docs have recommended to me taking a PPI (proton pump inhibitor) like Omeprazole once a day combined with an H2 Blocker (like Pepcid) instead of the same meds 2x a day. I need to research the benefits of Esomeprazole.
A recent article came out discussing how patients that have switched from OFEV to Esbriet (or vice versa) have fared better than being on the same antifibrotic. I brought this up on my recent visit and he felt to switch because of undesirable side effects makes sense, but he did not feel switching antifibrotic medications for the sake of switching is the way to go. Based on his experience using antifibrotic meds, he feels OFEV in the long run is the better of the two to use long term. It’s anecdotal. I continue to do well with OFEV but I don’t take it on an empty stomach and take it with Zofran 8mg to avoid nausea.
Says would be referring to the SaO2 level (blood oxygen level). Pursed breathing raises the PaO2 level.
I agree that this throat clearing stuff is partially from GERD so I’m looking to see if twice a day meds (Omeprazole Pepcid) reduces it. But i recall reading patients with IPF often have a mucous producing gene associated with the disease. I never had this mucous/hoarseness issue before my IPF diagnosis (3 years) as I’ve been on Omeprazole daily for well over 6-7 years.

Bernard thank you the advice on Esomeprazole.
Don Salzberg MD

[Linda Maguire]

@bernardmckenna

Bernard,

I agree that the Baylor study using Nexium to treat pulmonary fibrosis looks very promising.  Keep in mind, though, that the study was done using lung epithelial cells in a laboratory, not actual patients, & the authors noted that further studies were needed to confirm their results.  While they state that higher doses than normally used for GERD would be needed to achieve lung remodeling, Nexium & other PPI’s have been shown to cause dementia & kidney failure, among other negative side effects.  I’m glad you’re seeing positive results, however I’m just suggesting that you work with your pulmonologist to find a safe dosage that won’t result in other issues.  Hopefully further studies will be done with IPF patients and safe dosages will be determined in the near future.