Doug Jones

[Doug Jones]

@yoli

The two most common side effects of Esbriet are 1) increased photosensitivity, i.e. more likely to sunburn and 2) gastrointestinal issues including nausea and diarrhea.  Most GI symptoms go away within the the first 3 months as your body adjusts to taking the medicine.  During that time (and afterwards) it is suggested that you take the Esbriet with food which usually reduces symptoms.  Also, your doctor may temporarily reduce the dosage which may help during the introduction phase.  I also try to space out my doses taking them as close to 8 hours apart as possible.  For more information from the manufacturer see https://www.esbriet.com/taking-esbriet/managing-certain-side-effects.html?c=esb-163fb797758&gclid=Cj0KCQjw8IaGBhCHARIsAGIRRYrv9msK4kvrtMjoFP2Jm2vPwXdao1vJ0sKE-5y2BX8nqGC8osZV8icaAisFEALw_wcB&gclsrc=aw.ds

I have been taking Esbriet (pirfenidone) for over 6 years, since it was first approved by the US Food and Drug Administration.  I have been taking the full, normal dose of 801 mg three times per day.  I live in Tucson Arizona where the potential for sunburn is high so I found a hand/face lotion with SPF 15 that I apply daily to my face and arms.  I wear a hat and–if I am going to be out in the sun a long time–a long-sleeved shirt.  I also have long-sleeved beach wear made of comfortable sun-protective cloth that I wear if I go swimming or to the beach.  My fibrosis has continued but at a lower pace and I have been essentially stable for the past 2-3 years.

The alternative medication to Esbriet is OFEV which apparently has similar therapeutic results although it works differently.  There is a a much greater percentage of patients taking OFEV who have GI issues, however.

• This reply was modified 11 months, 2 weeks ago by Charlene Marshall.
• This reply was modified 11 months, 2 weeks ago by Charlene Marshall. Reason: tagging

[Doug Jones]

Hi Kate–this is a good topic, especially as many of us with reduced lung capacity begin to travel and fly again.  I have been researching this for some time and suggest the following authoritative resources:

1)  The Pulmonary Fibrosis Foundation has a an informational section on Oxygen Therapy that discusses traveling with oxygen.  See https://www.pulmonaryfibrosis.org/life-with-pf/oxygen-therapy  PFF also operates an Oxygen Therapy Information Line 844-825-5733 which you can contact.

2)  Most commercial airlines pressurize their cabins with oxygen levels comparable to 6000-8000 ft altitude.   Depending on what altitude you currently live at this could be a drop of about 25% oxygen from approximately 20% at sea level to approximately 15% at 8000 ft.  https://hypoxico.com/altitude-to-oxygen-chart/

3)  The Univ of Az Center on Aging has a brochure titled “Fit to Fly” that discusses flying for individuals with limited lung function.  See  https://www.uofazcenteronaging.com/care-sheet/providers/fit-fly-older-adults-and-air-travel#:~:text=Oxygen%20Pressures%20During%20Air%20Travel,21%25%20found%20at%20sea%20level.

4)  Most Portable Oxygen Concentrators (POCs) are accepted by major airlines for in-flight use.  When you get your POC,  double check the make with the airline(s) you will be flying to confirm.  Also, you should notify the airline when you schedule your flight that you plan to use your POC in flight because most want a document from your doctor certifying your need for oxygen.  Also, because the POC and cannula cannot be stowed in the same way other carry-ons are, you may be seated in a window seat so that in an emergency others don’t trip over your cannula.   All commercial airlines have a special unit that deals with “disabled” passengers.  Look for it on the website or ask the airline customer service agent.  Also, a POC is NOT counted as part of your carry-on luggage as it is a medical device.

5)  Lithium-ion batteries–the most common type of battery for POCs–are allowed as part of your carry-on–at least in the US–but NOT in checked baggage.  See the FAA guidelines at https://www.faa.gov/hazmat/packsafe/more_info/?hazmat=7   Most airlines want you to have sufficient battery capacity to last 150%  of the length of your flight. This may take some pre-flight testing on your part to see how long a battery will last at the rate you will use on the flight.  I assume margin of safety is because of potential delays extending the expected flight time.

Good Luck and Happy Travels.  It sounds more complicated that it is but ….

Doug Jones

[Doug Jones]

Hi Steve–sorry you are having problems with adverse effects from the 2 authorized IPF drugs.  I have been taking pirfenidone (Esbriet) since November 2014 when FDA first authorized its use in the US.  I am fortunate that I have not had any significant side effects.  One of the major medical databases–UpToDate– lists percentage of potential side effects from the manufacturer studies.  About 26% experience fatigue and up to 36% experience nausea.  For many, these effects seem to lessen after about 3 months.  Other suggestions–already noted–are taking a reduced dose and taking with food.  I’ve copied the info below.

You may also want to take a look at some of the medical literature about pirfenidone and nausea which reflects more recent real-world clinical experience. You can search in PubMed  https://pubmed.ncbi.nlm.nih.gov/  for free.   For example,  “Pirfenidone safety and adverse event management in idiopathic pulmonary fibrosis” European Respiratory Review  suggests improvement in adverse effects after 6 months.

Since Ofev and Esbriet are currently the only drugs currently authorized for treatment of IPF in the US, you may have to choose between quality of life and length of life–not an easy choice.  Hope you are able to better tolerate Esbriet soon–or find a regime that works for you.  Best wishes.  Doug

The following adverse drug reactions and incidences are derived from product labeling unless otherwise specified. Central nervous system: Fatigue (26%), headache (22%), dizziness (18%)
Gastrointestinal: Nausea (36%), diarrhea (26%), abdominal pain (24%), dyspepsia (19%), anorexia (13%), vomiting (13%), gastroesophageal reflux disease (11%)
• GI effects: Adverse effects including nausea/vomiting, diarrhea, dyspepsia, gastroesophageal reflux disease, and abdominal pain have been reported; incidence may be reduced by administering with food. The incidence of gastrointestinal events was highest early in the course of treatment (initial 3 months) and decreased over time.>

• This reply was modified 1 year, 5 months ago by Mark Koziol.
• This reply was modified 1 year, 5 months ago by Charlene Marshall. Reason: formatting to remove code

[Doug Jones]

Just a few comments about POCs and some reliable sources of information:

1)  The Pulmonary Paper organization prepares an annual comparison of oxygen concentrators with detailed specifications from many companies. Latest is 2019.  Included are both continuous flow and pulse flow models as well as models such as the Simply/Go that Charlene mentions which will do both–although not at the same level.  https://www.pulmonarypaper.org/portable-oxygen-concentrators-comparison-chart-2019/

2)  Suggest you visit the Pulmonary Fibrosis Foundation (PFF) website, especially the section that deals with Oxygen Therapy which includes a wealth of reliable information about needs, options, requirements and guidelines  https://www.pulmonaryfibrosis.org/life-with-pf/oxygen-therapy  Also, the PFF has a FREE professional Oxygen Therapy Information Line 844-825-5733 which can provide individualized information.

3)  Be aware that the FLOW RATES on oxygen concentrators are NOT equal to liters/minute.  Normal air is about 80/20 nitrogen/oxygen.  Concentrators remove most of the nitrogen so the output varies from approximately 88%-96% pure oxygen.  If your doctor says you need 5 liters/min of oxygen, a POC operating at 90%  will provide only 4.5 liters/min.

4)  I have a large oxygen concentrator from Inogen–about the size of a carry-on suitcase–that weighs 18 lbs and provides  CONTINUOUS flow up to approximately 4 liters/min which I use for sleeping with my CPAP machine.  I have an Inogen One G3 that provides PULSED FLOW up to approximately 4 liters/min that I use for walking, exercise, etc It is FAA approved. Those were provided on a rental basis through Medicare.  I also purchased a SimplyGo portable oxygen concentrator that I use for travel because it provides up to 2 liters/min CONTINUOUS flow oxygen that I use with my CPAP on trips.  That level may be too low for some but your sleep oxygen requirements may be lower than waking so for me it still works.

5) If you plan to travel (post-COVID 19) there are companies and cruise lines that specialize in helping those of us who need oxygen therapy when we are away from our home resources.

There is much to know about oxygen therapy and I suggest you read the online brochures on the PFF website for more detailed and authoritative information.  Good luck–and join the club.  Doug Jones

[Doug Jones]

In the US there are two drugs approved to treat, i.e. slow the progression of IPF–Ofev and Esbriet (pirfenidone).  Clinical outcomes suggest that neither is better than the other.  So if you are really have trouble with the side effects of Ofev, considering talking with your doctor about Esbriet.

I have been taking Esbriet over 6 yrs–since it was first approved in the US–and had minimal side effects.  Of course, everyone responds differently.  I do have to be careful in the sun (wear sunblock and long sleeve shirts & hat) as it increases photosensitivity.

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