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 w…[Read more]

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 w…[Read more]

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 ht…[Read more]

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 si…[Read more]

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 m…[Read more]

Hi Jackie–Sorry to hear about your IPF diagnosis but welcome to the club!  I have had episodes of coughing over my 5 years with this disease.  For me, coughing comes and goes–but you may never have this symptom.  Is your doctor prescribing anything for the GERD?  GERD is apparently common in as many as 80% of pulmonary fibrosis pat…[Read more]

Hi Cindy–I struggle with the same problem. A couple of small tips that help me are the following:

1)  I spray my throat with Chloraseptic sore throat spray beforehand.  It has 1.4% phenol which is a mild anesthetic.  I’m sure there are other brands including generics.

2) I bring a water bottle with me and take regular sips to keep my throat mo…[Read more]

Bob and Trixie–Sorry about the “messiness” of my response.  I copied the info from the PFF and it included all the formatting.  the phone number to call  is 844-825-5733 for the PFF Support Line.  Doug

Hi Bob–as Mark mentioned, you will need a prescription from your doctor for oxygen.  I have IPF and need oxygen.  Medical facilities have developed COVID-19 protocols which protect both patients and staff when procedures such as a Pulmonary Function Test ((PFT) and 6 Minute Walk Test (6MWT).  I had a PFT performed in July 2020 and have another on…[Read more]

1)  Charlene–gentle clarification re: COVID-19 terminology.  COVID-19 is the name given to the disease which is caused by a particular NEW corona virus–<span style=”color: #000000; font-family: ‘Open Sans’, apple-system, blinkmacsystemfont, ‘Segoe UI’, ‘Helvetica Neue’, arial, sans-serif; font-size: 17px;”> </span><span style=”color: #000000; fo…[Read more]

For those interested in the formal recommendations from the American College of Chest Physicians, you may want to check out this article from CHEST–their official, refereed publication from 2018; below is an abstract of the article..

Doug Jones

Treatment of Interstitial Lung Disease Associated Cough:  CHEST Guideline and Expert Panel Report.   …[Read more]

These response are interesting; glad that gabapentin may work for some.  I note that the research study cited from Lancet EXLCLUDED chronic coughers who had a respiratory disease so its effectiveness for IPF patients may not be the same–see excerpt below.  The medical literature shows mixed results for gabapentin in controlling cough–plus a v…[Read more]

Consumer Reports recently reported on “The Best Flu Treatment for You”  which includes many of the suggestions noted in the previous comments.  However, Elderberry has very limited research support so I would be skeptical of that.  See the full report at https://www.consumerreports.org/flu/the-best-flu-treatment-for-you/
<p style=”box-sizing: bor…[Read more]

Regarding “Off-label” use of a drug, the October 2019 issue of AARP Bulletin (page 36) has the following information and link to determine if a drug is being used “off-label”, that is, for a purpose it was not originally validated to treat.

“At DailyMed.nim.nih.gov   you can check if the drugs you’re currently taking are off-label for your d…[Read more]

I will be attending the PFF Summit and plan to take some informal notes to share with my local Pulmonary Fibrosis Support Group.  Doug