Cynthia

What appealed to me with the large Simply Go (not the mini) is that it has continuous flow, which I need for sleep. It would make it so much easier to travel without arranging for a concentrator. And sometimes I just want to go for an overnight trip.

It won’t be a magic bullet, but he seemed hopeful that I’d see some improvement. I definitely have some scarring that can’t be reversed, but there were areas on the CT scan where he said it was hard to determine whether it was inflammation or scarring. Given the autoimmune issue, he’s now thinking some of it is inflammation and that the drugs will…[Read more]

Has it halted the progression of your PF?

I consider it a good day when I go for more than an hour without thinking about this disease. Usually there are physical and mental reminders that make forgetting about it impossible. On a good day my chest doesn’t feel tight or heavy, breathing isn’t a struggle, and I have some energy. I get errands done, finish some work, go to pulmonary rehab,…[Read more]

I was first diagnosed with interstitial lung disease in May 2019. Because my blood tests were inconclusive, my pulmonologist decided to call it IPF rather than an autoimmune issue. I went on Ofev. When I had a flare-up of a skin problem on my hands, and the rheumatologist saw it, he ordered a skin biopsy, which proved positive for “mechanic’s…[Read more]

Hi Charlene. Thanks for responding. Yes, the smog could be an issue, but on those days I’d just stay in my air-conditioned apartment. And probably during the hottest part of the day in the summer. But I’ve stayed with my daughter when the temps were in the 90s and it didn’t feel hot to me at all. So different without the humidity.

Yes, that would…[Read more]

A little off topic, but the nurse coordinator/practitioner in your pulmonologist’s office will become your best friend. Mine is very accessible and knowledgeable. She is almost always able to answer my questions, and she’s the one who oversees my oxygen needs.

I can’t get over how the humidity affects me now. We just had three days in a row with high humidity and I felt so lousy I was afraid I was in some kind of downward spiral — coughing, short of breath, fatigue, etc. Last night the humidity disappeared and I woke up feeling 100 percent better. It was so dramatic that I’m now thinking seriously of…[Read more]

The 3-5 year prognosis was last updated in 2014, the same year Ofev and Esbriet were approved. Those two drugs are extending life expectancy.

That’s exciting research. Thanks for sharing it, Mike.

Jill, I’m wondering if the supplemental oxygen might resolve some of your issues, like the headaches. Be sure to get an oxymeter and check your oxygen throughout the day. I was prescribed it for exertion, which I initially thought would be a long walk or yard work, but I’m finding I need it even when puttering around the house, and certainly when…[Read more]

Linda, there are some clinical trials that are ending now combining Ofev and Cellcept for PF that’s autoimmune related. The results have been very encouraging. I’m on Ofev now because my official diagnosis is IPF, but autoimmune issues haven’t been ruled out. The doctors on my team think this combination of drugs could be very effective for me. I…[Read more]

Yes, the shrunken world you describe makes a lot of sense. That’s how I feel too. Everything I used to take for granted now seems harder — or even out of reach. You’d think I be reading more than ever, but like you I’m having trouble concentrating.

I’d forgotten you started a similar column a few months ago. I just went back to it and many of the comments resonated with me. Yes, I did (and still do) have fatigue, but again I chalked that up to my age. Fatigue would be far more noticeable at 28. Fortunately I’m virtually retired now so I can rest for a few hours in the afternoon.

Have a…[Read more]

Some of my symptoms existed before the Ofev so I’m not sure I can blame all of them on the drug. But it is comforting to know others experience them as well. I’m so hoping that I can remain stable for a number of years that I freak out when I start feeling anything that suggests my disease is escalating.

I started two weeks ago and side effects have been minimal. A little nauseous for a few days but no vomiting or diarrhea.

My doctor said the efficacy rates of Ofev and Esbriet are the same. It was my choice so I went with Ofev because it doesn’t have the sun exposure issues and it’s just two pills a day.

My team of doctors includes a…[Read more]