[Cecil Zlotnick]

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 my lungs whereby my lung capacity changed from 65% to 40% over a period of 3 months.

I am now on the full dosage and had I known, I would never have settled on the 2/3 dosage.

I’m not sure whether the full dosage would have prevented the deterioration, but based on my experience, I would recommend persevering with the full dosage of 801mg, 3 times a day,               i.e.  2403 mg per day.

[Cecil Zlotnick]

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 the presentation.

I would be very interested in getting detailed exercises that could remove lung scarring if possible.

[Cecil Zlotnick]

Hi Wesley,

 

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

Please send the link.

Cecil Zlotnick

[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 and went home.  Not on oxygen except at night.  Prednisone was prescribed at 30mg per day for a month.  Thereafter it was dropped to 20mg per day for 2 weeks.  Thereafter it was reduced by 2.5mg per week until by 3rd December I was off totally.  I’m pleased that I’m off the Prednisone as I lost a lot of muscle mass and got a big stomach.  Also, it made me diabetic, which I had never been before and suppressed my immune system, making me vulnerable to a lung virus. which could be fatal.  The antibiotic necessary to protect against it is a Sulphur drug, which I am allergic to.  So I’m very pleased not to be on Prednisone anymore.  I have been taking Esbriet since February last year.  Unfortunately, the fibrosis has worsened and now my lung capacity is only 40% and I am on oxygen full time – 2.5 LPM.  I have started taking Serrapeptase and am about to start Nattokinase as well, in order to stop mucous and hopefully reverse the scarring of my lungs.

[Cecil Zlotnick]

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 day.  My health seemed unchanged until August when I had an exacerbation, landing me on oxygen and prednisone plus anti-biotics, in hospital. 6 days later I was back home, feeling better, off oxygen and being weaned off the Prednisone. I continued with the Esbriet.  A CT scan done at the hospital showed no further deterioration of my lungs.

However early this month I experienced breathing problems and my % oxygen dropped to 75% from 93%.  A CT scan was done and found that I had lost another 25% of lung capacity and am now on oxygen full time.  I also can’t exercise even with oxygen, without being out of breath.  I have upped my Esbriet dosage and am taking 30mg of Zinc at night.

I have just discovered the Serrapeptase medication and have started it right away.    I’d like to know whether anyone else is taking Esbriet and Serrapeptase at the same time and what results have been obtained.  Is scarring being removed?  What dosage of Serrapeptase is taken, etc.

I am terrified that the progression of my fibrosis will continue at the same high rate and am looking for a way to slow or stop it.  Any advice would be very welcome.

Regards,

Cecil

[Cecil Zlotnick]

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

[Cecil Zlotnick]

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 on oxygen and was active, running my engineering company which employs 50 people.  I was also walking about 3km a day for exercise.

In February, I was put onto Esbriet and was told to ramp up to 3 X 267mg capsules a day, over 3 weeks.  I managed 2 X 3 times a day but could not tolerate 3, 3 times a day.  My pulmonologist told me that 2 X 3 times a day would be good enough.  I went for 3 monthly check-ups with my pulmonologist.

I was fine until August when I had an exacerbation when my oxygen saturation dropped to 70% and I struggled to breathe.  Blood tests were done as well as lung function tests and I was admitted to hospital.  The tests showed that I had contracted a virus.  I was put on oxygen, Prednisone and an antibiotic.  Within 6 days, I was a lot better and released from hospital.  I was told to use oxygen at night only (about one l/min). Meanwhile, my blood sugar went up from the Prednisone, so I have to inject insulin twice a day.  I’ve weaned of the Prednisone, waiting for my sugar to return to normal

At the beginning of this month, I started having breathing problems and walking a slight distance dropped my oxygen to 70%.  I then had to be on oxygen full time.  I had a CT scan which showed a sudden drop in my lung capacity from 65% down to 40% in only 3 months.  This was a big shock to my pulmonologist and me.  I’ve increased my Esbriet now to a full dosage of 3 X 3 capsules a day and hope this will stop the fast progression of the fibrosis.  I’m on oxygen full time (2l/min and can’t exercise at all without my oxygen stats dropping into the seventies.

I’m terrified that the progression will continue at the pace it was from August to December, as if it does, I haven’t got long to live.  Has anyone experience with lower and higher dosages of Esbriet?  A suggestion has been to take Esbriet and Ofev at the same time.  Has anyone experience with that?

Any help or advice would be welcome.

Regards,

 

Cecil

 

[Cecil Zlotnick]

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 should progression of the scarring of my lungs.  Over 3 months, I have gone from 65% lung capacity to 40%.  I am still on 2l/min of oxygen with my oxygen level being over 90%, but walking short distances causes me to be short of breath and my oxygen plummets to 70%. Walking upstairs is much worse.

As explained before I was on 2/3 of the full Esbriet dosage as I couldn’t tolerate the full dosage.  As a result of this worsening of my lungs in a short period I am now on the full Esbriet dosage with the hope that it will stop the progression of the fibrosis.  Has anyone had a similar experience?

Now my pulmonologist is advocating taking Esbriet together with Ofev.   I am terrified of doing this.  Has anyone the experience of taking both at the same time and will it stop progression of the fibrosis?  Can the side effects be tolerated?

I am 74 years old and am too old for a lung transplant.  Please help with ideas and experience.

 

[Cecil Zlotnick]

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.  Well, I’ve settled on 2 capsules 3 times a day as 3 were too severe.  Dizziness, nausea and splitting headaches.  On 2 , 3 times a day I can tolerate the side effects which are still there.

What I’d like to know is whether with this dosage, is the fibrosis still being slowed or stopped.  Anyone with similar experiences?

[Cecil Zlotnick]

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 have any underlying autoimmune disease and the origin of my disease is unknown.

 

I have been taking Esbriet since February and have settled on 2 X 267 capsules 3 times a day, which is the maximum I could tolerate due to the debilitating side effects.  This is 2/3 of the full dosage which is acceptable to my pulmonologist.  When I was on the full dosage, dizziness, headaches, nausea and tiredness prevented me from working.  I have an engineering business and need to work full time.

Until August this year, I was doing very well and was walking about 3 Km per day.  My average oxygen saturation was between 92 and 94% but less during walking.

In August, all of a sudden, I started having shortness of breath and was unable to exercise. My oxygen level dropped to about 77%.  I immediately saw my pulmonologist who put me on oxygen and immediately admitted me to hospital, where I was given prednisone (cortisone) and an antibiotic as I was diagnosed with a viral infection with a secondary bacterial infection.  In hospital, I was constantly on 2l/min of oxygen which increased my oxygen saturation level to 95%.  After 3 days, the external oxygen was reduced to 1l/min and after the 4th day, removed altogether as my oxygen saturation had increased to 93% without any external oxygen.  On the 6th day I was released from hospital and went home.  I was told to use external oxygen at night for 2 weeks when sleeping, but not during the day.

My pulmonologist gave me a plan for the reduction of the prednisone over 20 days.  However, after about 10 days, (prednisone reduced from 30mg/day to 10mg/day), I became short of breath and my oxygen level dropped into the 70’s and I had to be on external oxygen all day and night.  Upon consultation with my pulmonologist, it was determined that I must still have an inflammation and would have to be back on the prednisone.

I was on the higher dose for 10 days and 30mg/day, stats back up in the 90’s.  I’m slowly reducing the prednisone by 2.5mg/week and am currently on 12.5mg per day.  Slowly getting better and trying to exercise. I’m on oxygen only at night when sleeping – now 1.5 l/min.  Meanwhile the prednisone has caused me to become diabetic and I have to inject insulin twice a day. Apparently, this is temporary until I’m off the prednisone.

During the whole time I continued to take Esbriet.  The good news is that my lungs have not deteriorated in the last year as per the latest CT scan.  I’m hoping that it’s a result of the Esbriet and I’m continuing to take it.  No liver or kidney problems and only slight nausea or headache after the morning dose.

I’d love to hear of similar experiences and any advice anyone can give from anyone’s own experience and knowledge.

Regards,

Cecil Zlotnick

 

 

[Cecil Zlotnick]

Hi

[Cecil Zlotnick]

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 just could not function.

As a result, my pulmonologist approved me taking 2 X 267mg capsules 3 times per day.  This mean that instead of a total of 2,403 mg per day, I’m taking 1,602mg per day spread out in 3 doses of 534mg per dose (2 X 267mg capsules).  This has made a big difference to me.  I have relative few side effects and are not dizzy or nauseas.  When I wake up in the morning I take 2 pain killers even if I don’t have a headache, before I have breakfast and take the first dose of Esbriet.

My pulmonologist is very happy with this and in my latest 3 monthly checkup my lung function had actually improved slightly.

I hope this helps you and suggest that instead of one 801mg twice a day, you could take two 267mg capsules 3 times a day.

Good luck.

Cecil Zlotnick

 

[Cecil Zlotnick]

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 whether the cough is from the lungs.  Any ideas about it?

[Cecil Zlotnick]

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.

[Cecil Zlotnick]

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 pure anhydrous ammonia directly into my lungs as I was taking a breath.  The ammonia filled my lungs and I choked for a few minutes, not being able to inhale or exhale.  Eventually I got my breath back and coughed profusely until my breathing returned to normal.  I immediately consulted my doctor who examined me and put me on cortisone for a few days. Thereafter, I appeared to have no further problems.

In November last year, I had a bad bout of pneumonia during which I had difficulty breathing.  After a few days on antibiotics and cortisone I felt better but was sent to a pulmonologist for a checkup.  Chest X rays were done followed by a CT scan .  The CT scan revealed scarring of about 30% of lung capacity throughout my lungs.  Further blood tests were done and any autoimmune disease was ruled out which may have caused the fibrosis.  According to my pulmonologist, the scarring was old and appears to have been there for at least 18 months.

This led me to try to find the cause of the fibrosis and the ammonia incident was foremost in my mind.  I researched literature on it and although some medical articles seemed to point to this possibility, there did not seem to be sufficient information.  When ammonia enters the lungs it reacts with moisture causing an exothermic reaction, liberating a lot of heat and burning the lungs.

Although one would think that undamaged parts of the lungs should be unaffected, from the CT scan, pulmonologists think that the fibrosis is progressive and are sceptical about ammonia having caused the fibrosis.  There is evidence that ammonia ingestion can cause it but insufficient data on it.  We are therefore uncertain of the cause and the rate of progression.

As a result I have been on Esbriet since January.

Another possible cause of PF is from cholesterol lowering statin drugs, prompting an FDA warning.  I have therefore stopped taking Crestor which I had started 18 months ago.

I’d love to hear any other instances of similar exposure.

 

 

[Cecil Zlotnick]

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. dizziness, nausea and headaches.  My pulmonologist is happy with me being on 2 capsules, 3 times a day.  Side effects are very slight and some days I have no side effects. In order to prevent headaches I take 2 propain tablets when I awake in the morning even if I don’t have a headache.  Main side effects are after the first dose in the morning.  Later in the day I don’t have side effects.

Upon monitoring my oxygen level with a pulse oximeter, I have 93-94% oxygen level and am not short of breathe.  At what oxygen level does one need to go onto oxygen?

[Cecil Zlotnick]

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 is at least 18 months old concluded from chest x rays. We’re not sure where the fibrosis came from as I do not have an autoimmune disease. A few years ago , I had a nasty accident at my factory whereby I ingested a lungful of anhydrous ammonia and choked for over a minute. I’m not sure whether this caused burns and scarring of my lungs. Furthermore, since 2018 I have been on a statin for a blockage in my carotid artery. In 2017, an FDA warning was put out about statins causing interstitial lung disease. Upon seeing this I stopped taking statin (Crestor 20mg/day).
In the meantime, I started Esbriet 2 1/2 weeks ago. First week:- 1 X 267g, 3 times a day. Second week:- 2 X 267g, 3 times a day. This week I went onto 3 X 267g, 3 times a day. First 2 weeks, no side effects, except right at the beginning of the first week. The problem is that I can’t tolerate the full dosage of 801g, 3 times a day. I have severe dizziness or light-headedness, nausea and headaches. With the dizziness, I can’t function and this is a problem as I have an engineering business to run.
Does anyone know whether taking a lower dosage is still effective against in stopping progression of the fibrosis? Anyone know of cases where te fibrosis does not progress without anti fibrotic medication?

Thank you,

Cecil

[Cecil Zlotnick]

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.

[Cecil Zlotnick]

Thank you Norman

[Cecil Zlotnick]

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 I’ve seen knows the cause, the choice is between a watch and wait approach, which is dangerous or going onto the medication immediately risking the side effects.  Well I didn’t want to take a chance with the watch and wait approach, so I started Esbriet treatment on Sunday.  Fortunately thus far, I have had minimal side effects – dizziness for the first 2 days but nothing since.  I am still on a low dose of 1 capsule (267mmg) 3 times a day for 7 days.  Then I go onto double that for 7 days and thereafter treble the current dosage.  I just hope there are no bad side effects with the higher dosage.

[Cecil Zlotnick]

Hi Don,

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

[Cecil Zlotnick]

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 put on Crestor in 2018 due to a partial blockage of my carotid artery, although I don’t have high cholesterol.   The scarring appears to be at least 18 months old.  Anyway, I’ve stopped taking the Crestor altogether.  Hopefully this will also help.

[Cecil Zlotnick]

Thank you, John

[Cecil Zlotnick]

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 with water creating heat (exothermic reaction) which may have burnt parts of the lungs, resulting in the scarring.  If this was the cause of the fibrosis, I can’t understand why it should progress further as the cause was removed.  The pulmonologists I’ve seen, after diagnosing me with fibrosis, haven’t had experience with it and don’t think it was the cause.  They still maintain that the fibrosis I have is progressive, therefor I need to take the anti fibrotic medication. The big question is:-  if the ammonia caused the scarring will it progress?