Donald Salzberg MD

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 for…[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 re…[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. Requires…[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 sun…[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 tha…[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 Brigham…[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 tre…[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 disea…[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 ge…[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 b…[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 perfect…[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 the…[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 ove…[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 p…[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 pul…[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 when…[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 to…[Read more]