Hi Donna,

I was diagnosed with an Interstitial lung disease in November 2021.

In February this year I started Esbriet but because I couldn’t tolerate the full dosage of 801mg, 3 times per day, I settled on 2/3 of the dosage, which is what my pulmonologist said was good enough.

Unfortunately, last month I experienced a major deterioration of… Read more

Hi Wesley,

 

Thank you for the zoom recording.

 

Unfortunately, I found it of little help in the prevention or cure of scarring of the lungs for an IPF sufferer.  There was very little discussed on the lungs and although the presenter mentioned             2 exercises, they weren’t detailed enough and very little time was spent on them in… Read more

Hi Wesley,

 

I am very interested in the link for the healing scar tissue recording.

Please send the link.

Cecil Zlotnick

I was diagnosed with an interstitial lung disease in November 2021.  Then I had 65% lung capacity and not on oxygen or Prednisone.

I August this year, my oxygen saturation took a dive, and I ended up in hospital on intravenous cortisone and an antibiotic, blood tests revealing a virus and a bacterial infection.  After 6 days, I was much better… Read more

Hi All,

I was diagnosed with ILD in November last year.  A CT scan revealed that 35% of my lungs were scarred.  At the time I was not on oxygen and led a normal life.  In February, my pulmonologist started me on Esbriet.  Because of the side effects I could only tolerate 2 X 267mg 3 times a day instead of the recommended 3 X 267mg 3 times a… Read more

Hi all,

 

I have IPF and am taking Esbriet, 801mg per day (3 X 267mg).

I have recently been interested in taking Serrapeptase as well as the Esbriet as some say the Serrapeptase can reverse scarring in the lungs.

Can it be taken while taking Esbriet or will it counter the effectiveness of the Esbriet?

Any advice would be welcome.

Cecil

Hi all on this forum.

I am 74 years old and am from Johannesburg, South Africa.  I was diagnosed with an interstitial lung disease in November last year after a CT scan following a bout of pneumonia, which affected my breathing.  My pulmonologist told me that my lungs had 65% capacity owing to the scarring or fibrosis.  At the time, I was not… Read more

Is this possible?  Will it stop the progression of fibrosis?  Is it recommended?  Has anyone done so?

Are the side effects tolerable?

Hi All,

Since my last thread on 1st December (above), which was after an exacerbation in August, I started having difficulty breathing and had to use oxygen all the time – about 2l/min I went for a CT scan and saw my pulmonologist the next day.

I was shocked to hear that although my lung function was similar to a month before, my CT scan… Read more

I am 74 years old.  I was diagnosed with an interstitial lung disease a year ago.  Approximately 30 to 35% scarring.  I’ve been on Esbriet since February.  My pulmonologist told me that the full dosage is 3 capsules, 3 times a day but if I could not tolerate the side effects, it would be acceptable to go with as much as I could tolerate. … Read more

Hi everyone concerned with IPF or ILD.

I am 74 years old and am from Johannesburg South Africa.

My story started when I was diagnosed with an interstitial lung disease in November last year after a bout of pneumonia and a CT scan.

I have 65 -70% available lung capacity with the remainder being scarred or having fibrosis.  I do not… Read more

Hi

Thank you Norman

Recommended dosage from some pulmonologists is 801mg, 3 times a day.

I cannot tolerate the side effects, particularly dizziness, nausea and headaches at this high dosage but at 534mg taken 3 times a day, I tolerate the drug very well.

My question is whether the lower dosage is adequate to still slow the progression of PF… Read more

Hi Malcolm,

I was diagnosed with PF in November.

Since February, I started taking Esbriet – trying to build up to 3 X 267mg (801mg) three times a day.

I could not tolerate it because of the side effects of dizziness, nausea and headaches.  I have my own engineering business and with this high dosage (equivalent to 3 X 801mg per day), I… Read more

Hi All on the forum.  I’m interested to know the type of cough associated with IPF.  I have a cough with phlegm but think it is from reflux.  It occurs mainly when I’m lying flat on my back in bed at night.  I sleep on my side – can’t sleep on my back.  I’m on Esbriet and don’t know whether it causes reflux resulting in the coughing, or… Read more

Hi All on the forum.  I’m interested to know the type of cough associated with IPF.  I have a cough with phlegm but think it is from reflux.  It occurs mainly when I’m lying flat on my back in bed at night.  I sleep on my side – can’t sleep on my back.  I’m on Esbriet and don’t know whether it causes reflux resulting in the coughing, or… Read more

Hi Doug,

Thank you very much for the information.  My pulmonologist tested me 3 months ago and found that my oxygen  was at 94%.  I had not yet started the Esbriet.  I’m due for a 3 monthly checkup next week and expect to have a full lung function test.

Hi all forum members.

I am from South Africa.  I am a metallurgical engineer and have owned a steel heat treatment business in Johannesburg for the past 41 years.  We use certain gases and chemical in our plant.

About 3 or 4 years ago, as a result of an accident during which a glass flow tube broke, I ingested a sudden high pressure blast of… Read more

Hi to all on the forum,

I was diagnosed with PF (interstitial lung disease in November last year.  Results from my CT scan indicated that I have approximately 70% lung function.  I have been on Esbriet since January this year.  I’m taking 2 X 267 mg 3 times a day.  I tried 3 X 267mg 3 times a day but could not tolerate the side effects viz.… Read more

Hi All participants on this forum.

I was diagnosed with Interstitial lung disease in November 2021. According to my pulmonologist, it is not IPF but is a fibrotic lung disease which she says is not as serious. I really don’t know the difference and assume this diagnosis came from my CT scan and lung function tests. The scarring on my lungs… Read more

Thank you very much for your advice Christine.  The reason I enquired about the cause was to find out whether the fibrosis would be progressive or not.  If it is not progressive in my case, possibly due to the statins I was taking or due to the incident I had with ammonia ingestion, then I wouldn’t need medication.

However, as no pulmonologist… Read more

Hi Don,

It’s great that your IPF has been stable for 4 years.  Have you been on anti fibrotic medication since your diagnosis?

Hi Donald,

Thank you for the reply.  According to my pulmonologist, the PF is widespread through the lungs as shown by the CT scan.  According to her, I have about 60% lung volume not affected.

Another cause, which I have found in literature, is from statins.  The FDA has warned that statin drugs can cause interstitial lung disease.  I was… Read more

Thank you very much to all who replied to me.  I have started taking Esbriet today and am hopeful that it will slow progression without intolerable side effects.

Thank you, John

Hi Duncan,

 

Thank you for the advice.  The reason I asked about ammonia is that about 3 years ago I had a blast of pure ammonia in my face as I inhaled, as a result of an accident at my factory.  I choked and couldn’t breathe for about a minute.  Eventually I got my breath back, after coughing and wheezing.  The ammonia reacts in the lungs… Read more

Hi All,

I’m very new to IPF.  Discovered in November from a CT scan after a bout of pneumonia.  I have approximately 70% lung function.  I feel good, no shortness of breathe and since November I’m walking 3km per day without adverse effect.  Over the last 4 months, I’ve lost 12kg by dieting.

I’ve been racking my brain about the source of the… Read more