Just started Tyvaso on September 23. I’ve been on CellCept since May 1, 2019. I have never used Ofev or Esbriet. I was first diagnosed, successfully, on May 1, 2019. The reason for the addition of Tyvaso, PAH has developed. I have joined a study at Oregon Health and Science University regarding Tyvaso. Currently I am on 24/7 home oxygen,…

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Thank you for this initial inquiry and the replies.

i have been prescribed Tyvaso. I do have IPF and PHT. We are having fits with the insurance (Medicare, and BCBS in the USA) getting “certified” for this medicine.

Also, I just joined a survey/study at our local research hospital for Tyvaso.

thank you, again, for the very informative posts. …

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Thank you – just now going through the process.  Very useful and informative information.

I love Dr. Greenspan. He is a very inspirational professional – living near his facility would be great. However…

In listening to the podcast he is enlightening on the problems with all or nothing thinking. The solution “just breath” is problematic to me. If I quiet my world, focus on my breathing, my mind immediately focuses on my… Read more

Great news Denyse!  Thank you for sharing.

I was first diagnosed January 4, 2019 with IPF – Physican’s Assistant immediately recommended ofev. I demurred. My Primary Care Physician suggested we get a second opinion. My lung capacity was measured at 21% of predicted. Not a great place to “start” – but we do not get to choose!  On April 26 the… Read more

Hello Charlene,

I wonder about this? The Pulmonary Fibrosis Foundation had a database of patients, patients with IPF that it “was” maintaining on a voluntary basis. PFF stopped that process due to lack of funding. In the article above, it identifies:  “Healthcare organizations can take a shortcut through this part of the process by purchasing… Read more

Thank you, Carl.  Which clinic is spearheading your care?

I was at Corvallis Clinic, now migrated to OHSU.

Symptoms at bay, at the moment, seems I may have had this, undiagnosed since about 2015. Diagnosis Jan. 4 this year. I can’t say I have notice any deterioration since I first noticed breathing shortness when exercising, back in… Read more

Thank you Doug ( @doug-batten ) for the reply,

Would you let us know how you are doing, what drugs you are taking, and your prognosis?

Keith

Devil’s bargain!

My first Pulmonologist simply prescribed ofev, and rather Cavalierly too.

As I moved to Oregon Health & Science University, the Assistant Professor there has me on mycophenolate & prednisone. But, this regimen just started today. Esbriet and Ofev are evolving into their own problematic outcomes – it “may” ebb or stop… Read more

Thank you Marianne and Doug,

I was first diagnosed January 4, 2019. We discovered my IPF as the result of a scuba diving accident, decompression sickness, back in May 2018.

I start on the medicine in the morning, mycophenolate and prednisone. The Pulmonologist who initially diagnosed my IPF recommended ofev. My local primary care… Read more

Are there any other IPF patients here in Oregon using this forum?

I am in Newport. Being treated at OHSU in Portland. Previously at Corvallis Clinic.

Have a great day

 

 

 

Hello Mark,

Our “local” medical research university is located up in Portland, OR, about 130 miles distant.

https://www.ohsu.edu/xd/

They are the local experts. Not with the reputation of National Jewish in Denver, nor the mighty Mayo, but one with a stellar reputation, none the less.

 

Keith

Thank you for sharing your insight, Mark. It seems this affliction interrupts our otherwise normal life. Mortality was always “out there” – but not in our present day to day existence. “Health” is and has always been very important. If something is amiss, we get it fixed, heal, and move on. IPF is evil. What life was like unfolding before… Read more

Yes!

 

Thank you for your insight on ofev, Bill.

Since ofev was approved on the same date as esbriet, back in 2014 are you aware of any studies that reveal the effectiveness of either of these drugs?

I have been prescribed ofev. I am not taking it. Rather, I am seeking a second opinion on my IPF and the prognosis from our nearby Oregon Health &… Read more

Thank you for sharing your concerns, and to every one who responded. “Information” is very welcome.

My Pulmonologist said nothing about “transplant” being an option. Then again, the Pulmonologist in my case left it to his Nurse Practitioner to give me the news of my diagnosis. Basically all she “informed” me was that the results of my lung… Read more

Interesting reading. I am sorry for those who know others who have predeceased us – sad when this demon takes someone.

I am a newly diagnosed IPF member of our PF community, just January4. Presently I am “dealing with” – not really referring to “fighting” nor “living with” – rather just dealing with it.

One response I get, from those who… Read more

Sorry to hear about your cold. The scary part you have already experienced, having it cause further serious damage resulting in a hospital stay.  I hope your cold runs its course, staying just a simple cold.

Travel – the most interesting, and perhaps the most enjoyable travel experiences we have had was to the Galapagos. We’ve been there… Read more

Thanks Bill, insightful.

All the best,

Keith

Never really thought about this, so thank you for suggesting the topic. I am a newly diagnosed IPF victim. Consequently I have only family and a few close friends that have heard any input from me, regarding my affliction.

I will give it a shot.

On May 1 I experienced a scuba diving accident, the bends. My body did not dissipate the… Read more

Thanks Charlene,

I met with the Rheumatologist on Wednesday, he is having his lab do some analysis on my blood to see other bodily effects of PF.

On Monday I have the barium swallow test. There is a problem with the upper esophageal sphincter that we are hoping to uncover through that test. With interstitial pneumonia water is present in… Read more

Whew, happy to hear it was nothing serious!

 

Keith

Yesterday, I surmised I have had my head in the sand about long enough, time to check out my future. Went to the local Walgreens, thought I’d ask: what is the cost for a 30 day supply of Ofev (the drug my Pulmonologist is recommending)? The Walgreen’s pharmacy clerk could not have been nicer. She gasped at the screen, stated that she would have… Read more

Hello Charlene,

I misspoke in my first attempt here, it is idiopathic pulmonary fibrosis that has been diagnosed. We have two more Dr. visits this month in an attempt to ferret out the “cause” – which I believe to be a not-optimal functioning Upper Esophageal Sphincter – combined with diagnosed (but not consciously perceived by… Read more