Hi Sandyman. I agree with Briano about asking your doctor to try 100mg 2x a day and then work back to the 150 2x/day if possible. I have been on OFEV for 5 1/2 years and I still have my days. No question talking the OFEV with or soon after a meal is advisable. I take Zofran (8 mg) when I take the OFEV b/o accompanying nausea. Your body…

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Hello. I also am surprised that a Pulmonary physician would wait until your apparent IPF gets worse. If you have IPS in May progress slowly, or it may not, but nobody can predict this. You can have an acute exacerbation along the way, which will also make it worse more quickly. The whole purpose of the anti-fibrotic medication‘s is to slow down…

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Hello everyone. I have read the comments and just want to say how moved I am by many of the comments and suggestions that have been made here. Like Dr Strum I am a physician that knew nothing about pulmonary medicine until I got diagnosed five years ago at age 63. I have also been constantly looking at various options of treatments and…

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Hi Gavin. I hear and feel your frustration. I am a retired Ophthalmologist (2020) so I am not going to take the liberty of reading your scans as I’m not qualified. I was diagnosed in 2018 and a CXR (chest XRay) from a year before was “normal,” but once I got to see a pulmonologist, he immediately asked me if anyone that saw my CXR said… Read more

Hi Susan. I understand what you have been told. I think that a strict cut off (eg age 75) is being expanded at certain centers depending on your medical status. That’s assuming medically you are healthy enough to withstand the procedure, plus no recent cancer diagnoses, obesity, severe diabetes, heart issues etc. I am 68, so on one hand I prefer… Read more

I agree with you that Brigham & Women’s Hospital is excellent. I live in CT (2 hours away). I think it’s critical to choose a medical center that (of course has good successes) will be close to family/friends & advocates. My family is centered in Miami. It turns out Jackson Memorial Hospital just brought in two top-notch transplant surgeons.… Read more

Orphan Drug Status means it’s for a drug that treats <200,000 patients. I’ve asked my Pulmonologist about this.
Doc Don

My understanding is that this drug (which has been used in treating sone cancers) is in Phase 1b/2a study. One of the Centers is Tale. If you are on either OFEV or Perfenidone you are NOT eligible for the study. Ive read it May not only allow things down but possibly reverse some of the scarring. Seems exciting.
Doctor Don

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… 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… 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… 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).… 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… 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… 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… 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… 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.… 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… 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.… 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… 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… 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… 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… 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… 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… 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.… Read more

Hi Kris:

thank you for reaching out. I started taking metformin three months ago because my HbA1C crept up to 7.0. I saw a few articles that discussed the fact that Metformin  has some anti-fibrotic properties so it is synergistic with OFEV. I would not have started Metformin solely to help treat my IPF as there is no recommendation… Read more

Kris

regarding a biopsy it nay be too risky for you but that also depends on your cardiac status. If your CT scan is classic the biopsy may be not. When we’re you diagnosed with IPF?

DON SALZBERG  MD

Hi Kris/Linda

I agree with Linda that a clear cut CT appearance may be enough to make a diagnosis of IPF w/o the biopsy. I also can’t stress the importance of seeing a Pulmonologist who treats ILDs!  It seems many types of fibrotic lung disease benefit from OFEV (and Esbriet) so Although you are stable, anti-fibrotic therapy (done early) helps… Read more

Hi Kris

The VATS (video-assisted thoracic surgery) is done under general anesthesia. The right lung 🫁 is collapsed and a biopsy of the lung base is taken for a definitive diagnosis. A bronchoscopy (through the tracea) there is rarely enough tissue to make the diagnosis of IPF as the tissue from the base of the lung is needed.… Read more

Annette:

You state you have ILD and to be started on OFEV. Can I assume you were definitively diagnosed with IPF?  I take a Zofran for nausea every morning w/OFEV. Don’t take the meds on an empty stomach. Are you b starting the 150mg or 100mg. The benefits outweigh the SE. Keep a watch on your liver enzymes and watch alcohol intake. I’m a… Read more

Dear Kris:

I do agree with what Christine said in her reply. I’m a physician (retired Ophthalmologist) but I’ve continued to learn about IPF/ILDs. A high-definition CT can show a classic pattern c/w IPF. My case was not classic so initially my diagnosis was HP (hypersensitivity pneumonitis). That proposed therapy (steroids) was very different… Read more

Good morning. Im almost at the 4 year mark on OFEV 150 mg bid. Interestingly, I starred on Metformin (100 mg SR) two months ago. Metformin has a synergistic benefit to OFEV with regards to anti-fibrosis. My last DLCO (diffusion) actually improved after 2 months on Metformin. I have occasional diarrhea but nothing terrible. I did go to the… Read more

Hello. The term “IDIOPATHIC” means there is no known cause. If you have fibrosis (ILD) (Interstitial Lung Disease) due to/from asbestos, livestock, molds, statins, chemicals, Bleomycin, toxins/meds, Covid, severe smoke inhalation, RA, Sarcoid, scleroderma—then it’s not IPF (IDIOPATHIC Pulmonary Fibrosis). Those above causes/associations are… Read more

Cecil:

i have been on OFEV since my diagnosis 9/2018!  I likely had symptoms (not respiratory) for a year or two. My ultimate diagnosis was confirmed by a VATS lung biopsy. I’m grateful for being able to get OFEV and tolerating it as well as I do. As I love the sun/beach I knew Esbriet wasn’t for me.

Cecil:

Thanks for reaching out to me. The articles I’ve read on statin use and IPF are interesting. I’ve been on statins for many years. My IPF is stable since my diagnosis 4 years ago. Will certainly look into this. I’ve been diligent with my CPAP use. Sleep apnea is a hugely under-treated condition that is also linked to this wonderful… Read more

Hello Cecil:

I’m curious as to where in your lungs there is fibrosis. Most PF (pulmonary fibrosis) is at the base of the lungs.  The location of your PF May help differentiate IPF/PF from this awful ammonia accident. If it is truly from the ammonia incident I agree it should not progress unless by some crazy coincidence you were destined to… Read more

Hello Cecil et al. I’m Don. I do happen to be a physician (now retired Ophthalmologist). I was diagnosed with IPF 3.5 years ago. I was initially diagnosed with HP (Hypersensitivity Pneumonitis) but insisted on a VATS lung biopsy. The treatment for IPF is very different than the treatment of HP. A recent article was published that shows mortality… Read more

Christine:

i would start by calling Genentech at 866-422-2377. They often have nurses and/or pharmacists that you can talk to. I found therapy for me has helped. I kept projecting into the daunting future of this and it just creates fear, anxiety and put me in a survival (ie not living life) mode. Day by Day. Gratitude for a good day.

Hello Lori

I read your story that you wrote and comments from others. Amazing family history so I understand how acutely aware you are on what’s ahead. You haven’t mentioned your age.

Im Don and I’ve written here before. I’m a retired physician (I had a very successful solo Ophthalmology practice). After 63 blessed years of essentially… Read more

Hello Bruce et al:

At Walgreens (and CVS) the form asks a bunch of questions. There is no mention of IPF per se but they gave an option “chronic medical condition” which this certainly is!!  Once you circle that there is no issue getting a booster. Our government is giving lots of mixed messages about the booster. If one is immunocompromised… Read more

Hi Christie/Patricia/Bill

I think Christie brings up a good point about PMR (Polymyalgia Rheumatica). It’s typically in the 60+ age group. Aching/pain/weakness of proximal muscles (upper legs/arms/shoulders. Elevated ESR (also called Sed rate) typical. When associate with new onset headaches—over the diagnosis of Temporal arteritis is… Read more

Good AM Bill and All

I read your reply and I’m glad you are able to handle 300 mg per day. I still randomly have off days (ie diarrhea) but doable. What you describe about pain in the buttocks that radiates down certainly sounds more like lower lumbar disc/sacral disc compression. That does not seem c/w “peripheral neuropathy!”  You can have… Read more

Hi Maureen:

I find it amazing how so many different sets of symptoms affects each of us. I too have this “all of a sudden” sense of fatigue/body aching and sense of head fog often. For four months (2017) it plagued me everyday and I had to often cancel 20-25 patients a day and go home. No shortness of breath issues so I was clueless I had a… Read more

BMI is Body Mass Index. Over 30 is considered obese. If you weight only 150 you likely have a lower BMI so that will give you more favorable lung study results. So it may be appropriate that 100 mg 2x a day can be as effective as 150 2x a day but i would ask your pulmonologist that. I wish we all could look into a crystal ball to get a sense… Read more

Hi Mack

Thanks for reaching out. As an Ophthalmologist and not a Pulmonologist I have to be careful on that answer. The studies used 150mg 2x a day. For sure side effects go down with lower dose. Diarrhea with OFEV seems to ebb and flow (pardon the wording!!!!!). Have you used Immodium or an equivalent? I had nausea issues and found Zofran… Read more

Jill & Cindy:

In the questionnaire to qualify for a third vaccine—you qualify if you have a chronic disease (which of course we do). Whether you are on meds or not—you can have the third shot. I stand corrected on this. Not all chronic diseases suppress the immune system. Many do especially the meds that treat these diseases.
As for OFEV and… Read more

Frank:

Its likely a moot point as most people will be eligible for a booster soon anyway if you’ve had the second vaccine 6+ months ago.

Don