Donald Salzberg MD

Hi Charlene. I also can’t help saying something to people who vape. Especially the flavored ones. My pulmonologist has discussed with me how these young adults present with “popcorn lungs” etc. My landscaper came to my house yesterday and he was vaping. I told him about my IPF and the dangers of vaping. He immediately threw out all his cartr…[Read more]

Good afternoon everyone. Scott I agree that it is CRITICALLY important to differentiate IPF from other ILDs such as HP (hypersensitivity pneumonitis) et al. When I presented to my pulmonologist in 2018, I had just had an episode of shortness of breath and coughing. I had no history of lung disease or smoking, nor did I have a family history of any…[Read more]

Hello everyone. Monica I am happy to hear that you are PFTs improved over a period of time. As Adele and Mike have said the pulmonary function tests can vary from time to time. I was officially diagnosed with IPF by an open lung biopsy in 2018.  Prior to that a simple chest x-ray picked up that I had pulmonary fibrosis and a HDCT (along with my…[Read more]

Hi Chris:

So sorry you have this lovely disease. I also initially presented (at age 63) with what I thought was an asthmatic attack (never had that before). No cigs. Mild PF was seen on XRay and HDCT confirmed it. I wanted to have a lung biopsy done as at first I was going to be treated for HP (hypersensitivity pneumonitis)(Prednisone). My…[Read more]

Hi Daughter:

There are also foundations that offer grants to assist in co-pays which do amount to $9-12,000 per year. The Co-Pay Assistance Foundation and Healthwell Foundation are excellent and have provided me with co-pay assistance for the past 3 years as my income is low after I retired. Medicare does cover OFEV but that’s dependent on Part D…[Read more]

Hi Joseph. Why has your visual field worsened? Are you on meds for glaucoma?

Hi Maria. I had an open lung biopsy in 9/2018 and started OFEV soon after pathology came back IPF. I had intermittent diarrhea (still do) and nausea. For the past two years I chase the OFEV 150mg (2x a day) with Zofran 8mg. By accident a week ago I neglected to take the Zofran and two hours later I was quite nauseous so it likely does not fully go…[Read more]

Regarding cardiac issues, I went to my Cardiologist PRIOR TO starting OFEV. This was recommended by my Pulmonologist. Important to rule out (and get a baseline for) any pre-existing pulmonary arterial hypertension (echo) and Atrial Fibrillation (need for blood thinners—a potential issue on anti-fibrotics). My family history of AFib (brother) was n…[Read more]

Keep in mind the average MEAN  life expectancy for IPF patients on OFEV is 11.6 years versus 3.7 years on a placebo. A recent 3rd medication (sarcatinib) is approved or will  likely be approved for IPF. I am also convinced (as are many others) that untreated OSA (Obstructive Sleep Apnea) is very detrimental to IPF patients. Liver issues are mo…[Read more]

OFEV to my knowledge has no photosensitivity side effects. I am a huge sun worshipper and have been on OFEV for 4.5 years and have not had any issues. My Pulmonologist intentionally steered me away from Perfenidone as he knew my love on the sun. Still off course important to use skin protection. GI side effects vary from patient to patient. My…[Read more]

Mita

I have the Aetna Silver Script plan. Reach them at 866-235-5660 (24/7). From the time I’ve been on Medicare they have approved OFEV.

Good afternoon GratefulDeb (awesome name)! I see that you have a great sense of humor—so not lose that. I have had IPF since 2018 and C as soon as my diagnosis was confirmed by open lung biopsy, I immediately started OFEV. As Im a sun 🌞 worshipper I opted to avoid Perfenidone. I’ve been on Medicare since 2019. I was told by many drug reps over the…[Read more]

Hi. Adele you make an excellent point. RA (Rheumatoid arthritis) is a biggie s far as arthritic issues associated with ILDs. Scleroderma, Lupus, Sarcoidosis are some others.

<b>Many pulmonary fibrosis patients also suffer from aching joints and muscles</b>. As the condition progresses, less and less oxygen is able to enter the blood stream. This…[Read more]

Hi William. To answer your question I am curious as to what (if anything) worsens and/or lessens this pain? Where is the pain? Is it crushing vs sharp. How advanced is your IPF? So many causes of “chest pain” How old are you. So more info is needed. I have had IPF now for about 5-6 years (now 68) (on OFEV) and recently (2-3 weeks) noticed a che…[Read more]

Hello. I thank you all regarding Serrapeptase. Not tried it yet. It’s fully broken down by stomach acids so get enteric coated. Went to my ENT guru yesterday as I am chronically hoarse and have mucus since my diagnosis 2018. I have read IPF patients have a abnormal mucus-producing gene. My ENT feels this is all c/w reflux which may very well be a…[Read more]

Hi. I do think it helps to lie on R side. Patients who suffer from AF (atrial fibrillation), especially if intermittent (paroxysmal) should be careful sleeping on their L side as it puts strain on the atria. Also its critical to be tested for OSA (obstructive sleep apnea)!!!  I have OSA and without my CPAP device Im a different person the next…[Read more]

Hello

First of all I want to recognize Charlene for all you do for all of us. As a physician I spent 35+ years dedicated to helping as many people I could and at some point it became clear that I needed to listen to the tenet       “…Doctor heal thyself….”  Many docs (60%) are burnt out, depressed, over-worked and that stress makes this diseas…[Read more]

Hi Heather & Charlene

I first want to thank Charlene for your never ending insight on this disease. The topic of whether to continue working was so difficult. I had A super busy & successful & stressful solo Ophthalmology practice and for 35 years. I missed 2 days in 35 years from illness (I took a ton of vacations!!). I so loved my profession…[Read more]

I was diagnosed with IPF by VATS lung biopsy in September 2018. After 34 years of never being  sick, I knew something was wrong.  I had a very busy solo Ophthalmology practice, and once  I had a definitive diagnosis, I agonized if I should continue practicing, considering having almost daily oppressive fatigue. When Covid restrictions came on th…[Read more]

Hello

I had looked into Serrapeptase (SP) in the past. I’m on OFEV 150mg 2x/day for 3.5 years and very stable on HDCT/PFTs. SP is totally broken down by the stomach unless it is enteric-coated, otherwise likely useless. Recommended dosage is 10-60 mg/day (20,000-120,000 units).  Very little evidence it’s helpful for ⬇️Pulmonary Fibrosis. Lots…[Read more]