Jason
Forum Replies Created
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Great news, George! I wounder if it’s not too much to hope for that treatments will emerge that can, in time, arrest the fibrosis. I mean, that Ofev seems to be really extending time.
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Hello Katie, thank you for sharing your experience. I can imagine that with side effects like that, taking medications may well not always be worth it. It is not just life span but health span. I hope that the adjustments you are making and what Don has shared help you. And yes, it is possible that she has tried medications just did not share that the side effects were already experienced. That nasal version of Ofev, if little not side effects, looks awasome. I hope all goes well in phase 3. Maybe it will become available in 2021.
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Charlene, if I may, I’d like to share something around stress that you mention, if it is helpful. In my view, the nuts n bolts of stress management are mostly well known: moderate work load; sense of purpose; at least a few satisfying relationships; journaling worries, stresses, and solutions; meditation; yoga; weight lifting and cardio; community and one-one support; probably lots of cruciferous vegetables; etc.
To add to this, it can be really helpful to see stress management as being action oriented, as doing things, rather than battling thoughts or getting carried away by them when they are not helpful. Trying to start with positive thoughts and feelings is usually less effective. But do the thing, and the thoughts and feelings will follow.
How to do “thing thing”? One great resource is Tiny Habits by BJ Fogg, Stanford behavioural scientist. A great simple model for starting any habit in life, starting small and building up as desired.
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Karen, it makes so much sense to ask her about her feelings and reasons for not taking them. Normally I am very good at taking all day long to explore people’s choices with them. When it’s your mother…..not so easy. I guess we are both struggling. Thanks for the reminder.
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Hi Don, thank you for describing your experience. I am sure with your training and experience you have a great deal to draw from in dealing with IPF. With hope to hang in there using current medications until even more promising trials are finished, do you feel it is possible that IPF may never in the end shorten your lifespan? Lots of value to loosing weight, cutting stress, and enjoying life too. It’s promising to hear that.
The ECGC trial of only 12 participants may not show much, but at least green tea is highly accessible. The trials involving combining medications. Is that new medications that can be used with Ofev and Esbriet? Given your experience in reading the literature and working with patients over the years with various chronic illnesses, how long do you think it may be before treatments are able to stop this disease? How would inhaled Ofev be different?
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Hello Mark, thank you for the note. By the way, if I say anything insensitive let me apologize in advance. I don’t have a serious disease. I just care deeply about someone I love. Feel free to correct me if I say anything dumb 🙂
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Hi Peter, than you for explaining your experience. It seems that you and your pulmonolgist decided that there was a reason to wait. I guess with no symptoms, it was just easier that way. I am not sure of the pulmonoligists original view though. Why not start on meds the day of diagnosis? I mean, even preventatively? It certainly has been amazing you have not had symptoms, or at least not much.
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Thank you for the reply, Karen. Those other meds you tried may have helped. Best of luck.
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Hello Karen, thank you for your kind words. If this is denial, I am at a total loss for how to deal with it. These two new medications seem to really make a difference, and I can’t understand why anyone wouldn’t want to try them at least, and barring a massively difficult side effect, take them. The person I am talking about is my mother, and I would do anything to help her realize every extra year with us is worth these medications. I hadn’t thought of cost as a factor. How much do these medications cost? The two I am talking about are Ofef and Esbriet. Yes her diagnosis is fairly recent, about a year now, although symptoms have been around much longer. There is no denial when it comes to wills or avoiding covid19 though.
I am so glad your situation is stable. These medications are very useful and knowing you are taking them making them even more so. I hope that better stronger treatments come available as well.
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Hi Charlene,
Thanks for your response!
To be clear, this post was not about my relative, but about my immediate family, so this was about prevention. My relative does not have cats. But those in my immediate family worry about risks of getting IPF in future. So, the question posed is, would owning cats predispose one to getting the illness later in life?
That’s good to know that doctors have suggested cats would be okay. It would be interesting to see the studies on birds and see if the knowledge of bird risk came from studies that looked at more common pets like cats and dogs, which one would expect.
So you’ve decided to keep your cat but take common sense steps to mitigate the risks. I’ve tried to do the same. My best is that anything in the lungs at all in amounts greater than a certain threshold are probably not good. But lower amounts may be that. A scientists by the name of Rhonda Patrick mentioned in a video that young children exposed to pets, as in before the age of one, actually had greater resistance to disease later in life. Interesting.