Cynthia
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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, and have dinner with friends. I’ve had some rough days this summer with the humid weather, so I really have appreciated the good days when the air is cleaner and lighter.
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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 hands.” (Some 70 percent of those with mechanic’s hands get ILD.) That tipped the scale for the pulmonologist and he changed his diagnosis this week. I’ve just started prednisone and Cellcept. He feels this could be good news for me. If some of what they thought was scarring is actually inflammation he said I might actually “get better” and possibly get off the oxygen. And he said there’s a good chance I could go into remission. I left feeling more optimistic than I have since the initial prognosis. I’m almost 72 and if I can get six to eight good years on these drugs, I’ll take it happily.
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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 moving to LA where my daughter lives. I currently live in RI where the humidity in the summer is awful. And the cold, dry air in the winter is tough on me, too. I believe the lung transplant program at UCLA is large and good. Does anyone have direct experience with it?
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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.
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That’s exciting research. Thanks for sharing it, Mike.
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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 have no idea how long it will take for FDA approval.
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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.
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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 rheumatologist who believes I might have autoimmune issues. My pulmonologist, who specializes in ILD, thinks the CT scan is much more indicative of IPF. In choosing a treatment he said that if we go with Ofev or Esbriet there’s some evidence it will also help if my fibrosis is in fact autoimmune related. But if he uses the drugs normally used to treat autoimmune diseases, it could actually hurt me if it’s IPF. There are some clinical trials going on now that suggest Ofev coupled with Cellcept have been really effective for those who are autoimmune, so it might not be long before Ofev is approved for diseases other than IPF.
I happened to come across this article recently which really gives me hope that Ofev will extend my life. They estimate the mean survival rate of those taking Ofev could be 11 years. That would be fantastic for those of us who are diagnosed in our 70s or 80s.
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Btw, do you clean your cannula? When I’m out and about it sometimes touches surfaces that might be a little iffy. I’d like to use wipes on them but don’t the wipes have alcohol in them? Wouldn’t that pose a danger?
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My provider told me to replace mine every two weeks. They supply me with enough to cover that frequency. I suspect that every two weeks is all Medicare will pay for.
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They’ve started a free harmonica class where I go for pulmonary rehab. Let me know how you like it.
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I started noticing a change in my taste buds before I started taking the Ofev last week, but now it seems worse. I was always an enthusiastic and adventurous eater, and now the only thing that appeals to me are chips and ice cream. I’m forcing myself to eat healthier food, but am not enjoying it.
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Hi Charlene. Sure, I’d like to see something like that and would contribute occasionally. I think you’ve mentioned you administer a Facebook page, but I haven’t found that. Cynthia
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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.
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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 remove it. The disease is still progressive, but he says many people go into long periods of remission. I’ve seen posts on other forums from people who have been on Cellcept for years. Of course it has its risks; you’re much more vulnerable to viruses and infections, but I’m willing to take them.
I’d love to hear from others who have had long-term success on this treatment.
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Has it halted the progression of your PF?
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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 be great if you could connect me with someone who has used UCLA.
Cynthia
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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.
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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 carrying stuff (like laundry baskets) up and down stairs. And usually if it’s prescribed for exertion it’s also prescribed for sleep. There’s no downside to using oxygen as much as you need it, and there’s a lot of upside.
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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.
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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 great weekend at your cabin. Does your Simply Go serve all your oxygen needs for a getaway like that?
BTW, this is the first summer since my diagnosis, and it’s clear I feel much better when the days are less hot and humid. I was just miserable for a few days last week.
Best, Cynthia
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I haven’t even started meds yet, but I do see my interest in food dying. Like Robert, I used to love to eat, cook and go out to all kinds of restaurants. Funny that you mention a lobster roll, Robert. That’s the one thing I was thinking might appeal to me right now. I guess we’re true New Englanders.
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Thanks, Robert. I will talk with my pulmonologist about the statin. It looks like Esbriet is the IPF drug he wants to put me on, but I think the team working on my case, which includes a rheumatologist, is still debating whether I have IPF or an autoimmune issue. The good news is that Esbriet has been shown to help even if it’s an autoimmune disorder.
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I’m going to start the pre-evaluation process at Mass General in Boston soon. I’m pretty sure the Cleveland Clinic does transplants on patients in their 70s. That’s not too far from you, is it?