[pastordan]

I was recently having trouble composing the details of my health concerns in a more succinct manner. The patient portal used by the office to which I was addressing my missive had a character limit for the space into which I was to type it. I tend to be a bit verbose, as I was taught years ago to explain more rather than less if I need the reader to understand clearly. Well, I don’t know which AI system I was on, but I pasted my draft into that program and asked for a more succinct composition. I didn’t just get that. Instead, I got three different compositions of varied styles and lengths, each one easily able to fit where it needed to go. I chose the one that I felt best fit the occasion, and had less than a minute of editing to make it perfect, IMHO. I think I will make more use of the stuff as it matures, and will share my experiences with friends and family when the topic comes around. I also plan to get more sleep, and prepare earlier, so I don’t let my rambling brain work it’s way down to my fingers on the keyboard quite so profusely!

[pastordan]

thanks for this article!

[pastordan]

Advance apologies for the length of this reply. I’m a retired preacher, so I’m not real good at brevity.

I think I can ditto parts of nearly every reply in this thread. In January 2024, I started Ofev 150mg x2/day, and the diarrhea started the very next day. No, really.

Loperamide helped a little, but I still wasn’t confident about being able to resume driving a van full of elementary school students from their several schools to an after-school program. After a few days of being able to relate to the 9x/day in the bathroom, and feeling increasingly weakened, I stopped working and briefly stopped Ofev.

Another member of the household then had a positive Covid test, so I also took one and also got the plus sign. So, I went through a course of Paxlovid, and I was then advised to get back on the Ofev as soon as possible. Once I did, the diarrhea was just as bad. I attempted to adjust my diet, but that was more challenging than I thought it would be. I was soon switched to the 100mg. 2x/day, and I was better, but still not great. Not even good, really. Consulting with nurses, doctors, you fine friends, and even again with Dr. Google, I went down to one 100mg/day while I tried to learn/internalize more dietary tips. I had pretty good luck with that routine, taking one capsule per day with my largest meal. That detail eliminated the 12-hour spacing problem, too. After a bit, I bumped it up to the 150s, but still once a day. My pulmonary doc liked my plan to keep stepping up toward the full dose, so I’m now taking one 100mg capsule twice per day.

Well, it only works when I am very strict with myself regarding my diet. Gotta have protein with each dose, and preferably the type that’s slower to move on down the system, like meats, and full portions. A protein shake is helpful, but inadequate by iself. Helps to take the pill in the middle of the meal or soon after, too. I’m not yet confident that I should change one dose or the other up again, but that’s my plan. It’s a journey, and it’s been a somewhat bumpy road.

Tired of all the interruptions (here at home), so I will just say that I hope something in here is somehow somewhat helpful to someone. Au revoir.

[pastordan]

Since an ear or a shoulder has been mentioned here, I will mention that I am a retired pastor with some training in counseling, though no degree. I think that means I can’t bill your insurance, and probably can’t bill anyone for much if anything.

I began my ministerial journey as a volunteer visitor with terminally ill prison inmates, which I did for about 6 years. I was also the sole pastor of a small church for 12 years.

And around a year ago, I learned that I have IPF, as my pulmonologist suspected. I’m on Ofev, with which my experience has been a bit iffy. I’m not yet on O2, but I believe I will be by springtime, if not sooner.

I’ve not been working since about the time I started Ofev. My income is very minimal, from two partial pensions. If it weren’t for my wife and our church, I could be homeless. I get help from time to time from friends or family, and once in a while both. I’m living. One look and you could see I’ve missed very few meals in my 67½ years.

But enough about me. Anyone who ever wants to chat, e-mail, call, whatever, Facebook even, you could even write. Like Frazier Crane, I’m listening.

[pastordan]

George, John, if either of you can find a way to conclusively document the most likely cause of your own ILD, you can then search for an alternative treatment plan, alternative medication, and/or revised prognosis for your particular brand of ILD, caused by the same cause, and you might find something worthwhile, or devastating, to you personally. You could then share that newfound knowledge with this group, with your pulmonologist, and with everyone from your pharmacist to the American Lung Association. If you find great news, you might reduce the number of truly unknown causes of ILD by one or more, so I wish you well, and I will pray for your success. Given the number of known types of ILD, I’d venture that there will probably still be enough types to keep researchers busy for the remainder of your lifetimes and mine. I still pray for one big sweeping cure that proves me wrong, and if you happen to discover that, I will be forever in your debt.

[pastordan]

Hi, Pamela! Thanks for sharing this level of detail. I am pretty sure that radiologists choose their words carefully, so you never want to panic before asking your pulmonologist about something you read. He’s usually read it by the time you have, so he’s (or she’s) already started thinking about any changes that might seem wise for you. Please let all of that sink in.

I am 67, and I don’t come from families that display much longevity. I think I might want to swap your CT report for my own, because I have the things you don’t (cardiac calcification, issues with kidneys, spleen, etc., among other things), and some of yours sounds better than mine. Of course, I must confess that I’m a newbie to this particular ailment, but I am going to acknowledge the first anniversary of my diagnosis in a couple of months. Anyway, gotta run,but I will be back. I will urge you to write out your questions as they come to mind, so you can recall it all for your next doctor’s appointment. I will also urge you (and everyone) to talk these things over with your spouse, and/or caregiver. They MIGHT know how to respond to your current concerns. They might have questions about this illness that you could answer, or pledge to ask your medical team for the answers.

Peace and blessings to you and yours.

[pastordan]

I am surprised that you have received no replies on this question until now. I am using Ofev, also known by the generic name nintedanib. If you search this forum for Ofev, I strongly suspect that you will find plenty of discussion on the topic.

[pastordan]

I’m not sure what makes a diagnosis “official,” but I would be more concerned that it be accurate. I also want it promptly. I spent about 7 years chasing a diagnosis when it was thought that I might have multiple sclerosis, but in the end, they still don’t know what I had and still have. But enough about me.

The sooner you get a reliably accurate diagnosis, the sooner you can start some kind of planning. I started by saying as little as I could to most, and as much as I knew to a precious few. I did what my wife heard from the pulmonologist, and wove her recollections with my own from my new patient exam and interview, when Lung Doc said, “Well, it sounds like IPF, but we don’t have nearly enough information to say so.” So, blood tests, HRCT, a couple of 6MWTs, and maybe more, he said it was looking pretty sure, so now we wait. He didn’t want to start Ofev before I clearly needed it. Unlike the nice lady whose comments above make more sense to me than many (14 years? Awesome!), I didn’t have to wait long. My second LFT, 6 months after the first, showed “significant” progression, and I left the clinic with a prescription for Ofev 150g twice a day. So, to make a long story not quite as long as I could, I will simply wrap up by noting that I am now awaiting my first reduced-dose Ofev, hoping I’ll better tolerate the 100mg version, and won’t be gobbling so many Tums, nor spending so much time in the bathroom.

[pastordan]

I was prescribed gabapentin for pain in back of my eyes. I think I started with a daily total of 300 mg. Over time, that was bumped up in stages to 2400 mg/day. A few years ago, my PCP switched me to pregabalin (Lyrica), but I still don’t know why. It seems to work about the same, but with smaller and fewer pills. I had always read that one would need to taper out of it, but it seems that it’s okay if moving to Lyrica.

[pastordan]

For some reason the system is not accepting my detailed reply. Trying a short statement to test it. Hmm. That went through fine. Might be the length?

[pastordan]

Thank you, Packman. I think I will try that approach. I have been using — correction: TRYING to use Imodium as needed, but it seems like it is always needed. I am already on the 100mg 2x/day reduced dosage Ofev. When I switched from the regular 150mg dosage I felt it became somewhat better, but that hasn’t lasted.

Related: my generic Imodium package says not to take more than four softgels in 24 hours. Early this morning I was trying to remember when I had taken the first of my most recent four. Does anyone ever use more than four per day? Is this risky? What symptoms can result from too much? I would expect that constipation would be a possibility, but I have not researched the question. Anyone?

[pastordan]

I’ve been looking for a good oatmeal raisin cookie recipe. Thank you for mentioning Quaker Oats; I will try to find that one. I used to eat too many OR cookies when I could find ready-made cookie 🍪 dough at the grocery stores, but I think those vanished during the pandemic. I kept trying to tell people that anything containing oatmeal and raisins simply had to be a health food, right? I made some from an ad hoc recipe I created myself, through blending several published recipes that I found online, but that was before my multiple spine surgeries, and I am not sure I can tackle a kitchen project like that since IPF found me. Knowing that you found relief from the Ofev urgency gives me fresh motivation to refine my recipe, and maybe replace it. Question: did you include molasses? I don’t think I want to include it in my next attempt. Anyway, thanks again. Peace and blessings to all.