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Lifestyle choices such as eating well, quitting smoking, mild exercise and maintaining a healthy weight can help with the symptoms of the disease, improving quality of life and extending life expectancy.
Here are 12 Facts About Pulmonary Fibrosis Prognosis and Life Expectancy you might find interesting.
Have you learned anything else that you can share about your PF?
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Hi Charlene,I have done the Pulmonary rehab it was very good but as the disease progresses it gets very hard to do much except I try to walk as much as I can. Some nights I don’t sleep much due to Acid Reflux (which I get a lot of) so the result next day is I am very tired.thanks for letting me in on the forum . Sheila
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Hi Sheila,
Thank you for contributing to this thread…. acid reflux causing lack of sleep seems to be a big issue for many of us. As upsetting, tiring and frustrating as it is, please know you aren’t alone. There have been wonderful members who have shared how to reduce acid reflux in this forum, similar to Joyce, if you take a browse around. There are some good tips! 🙂
I find pulmonary rehab helpful as well, difficult for me to do but helpful overall. It is hard though because I know there will come a day where it becomes difficult. Good for you for continuing to walk as much as you can.
Wishing you all the best.
Warm regards,
Charlene.
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Hi to Sheila, I know what you are speaking of acid reflux. I have to eat a Tums or Rolaids often just to calm my stomach due to my Esbriet tablets. They are known for upsetting the stomach or digestion. However, if I remember to take them after eating a bit of food, then taking one pill, then about half way through my meal take another pill, and then again back to the food and be sure to have some bites of food remaining when I finish taking the 3rd pill. If I don’t do it this way I do get the indigestion. Also, sometimes at bedtime I have a short drink of water…bad move..it seems to either make me hungry or gives me indigestion. Need to take another Tums. My calcium is being kept up anyways since there is a lot of that in Tums and Rolaids. I sometimes have to eat a half slice of bread with some butter or marg. on it to keep the indigestion away. Whatever works I do.
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PLEASE! If you are still taking the capsule form of Esbriet, please talk to your doctor TODAY about switching to the brown 801 tablets.
I know I am lucky. We caught my IPF early, testing shows that Esbriet works for me. But, I also lost 40 pounds due to the nausea, and basically had given up. I applied for early retirement with Social Security, because I was certain I was dying, soon.
I started the new formulation in January. I have rescinded my retirement. The whole nausea thing, dialed back from 100 to about 5. I still have Zofram for bad days, but those are much fewer and farther between.
I am not “well”, but I am not on death’s door, either. I am actually begging you – get the pills! Do! They have changed my life!
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Hi Donald,
Thank you so much for getting in touch with us regarding this topic! Your experience with the Esbriet 801mg tablets is very interesting, and I am so glad it seems to be improving your quality of life (compared to the capsules). May I ask, just for my own clarification, are you encouraging people to switch from the tablets that you take 3x per day (9 tablets total) to the 1 tablet of 801mg of Esbriet? I know quite a few patients who take both and I’d actually be super curious to hear more about their experience of the two. I am not currently on this anti-fibrotic medication but I know lots of people who are.
What made you change from the capsules, multiple times per day, to the 801 mg tablet? Was it overall just how you were feeling, and wanted to try something else to see if you had reduced side effects?
Thanks again for sharing with us, your experience is really interesting and I am curious to learn if anyone else has had a simliar one.
Take care,
Charlene. -
OK, yes – to clarify: I started Esbriet using the 3 capsules 3 times a day in 2015. I changed to the 801 pill format this January, so that is 1 pill 3 times a day. So, Rick is exactly right, same dose in a different wrapper.
The capsules break up in the stomach, while the pills pass through, as you might expect. I find that the bulk of the nausea effects are due to the medicine being absorbed in the stomach. Going to the pill format dialed side-effects down from 100 to about 5.
I still do have some nausea, but Zofram works fine on that.
As for why I made the change – I didn’t, nor did my pulmonologist. The Kaiser Specialty Pharmacy just sent the new formula when we re-did my prescription in January.
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Hi Donald,
Thanks so much for getting back to me with this clarification, and I hope this note finds you doing well!
Definitely glad to learn about the confirmation of dosing with the Esbriet 801 as well. I think many people who are on this drug (I’m not, I’m on OFEV) will find this informative to know as well. So interesting that the Pharmacy just made the switch on you. Did your pulmonologist agree or disagree with the change at all, or were they indifferent as the daily dosage you’re getting is still the same?
Thanks again for getting in touch!
Charlene. -
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No problem Charlene. Happy to share if it can be of help. I certainly have made use of several hints/suggestions others have given. eg: hooking hose over the top of the bed rather than the foot is so much easier. Decided this morning as I was taking my shower that the hose OVER the curtain rod was great, also could hook it on the shower caddy and it also gives the hose a wash. Hey, multi-tasking, not bad! Have a great Earth Day folks.
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Hi Joyce,
I am so thankful for all the tips and tricks I’ve learned on this forum as well. I really appreciate all the time people put into responding, and the vulnerability that they are brave enough to endure by sharing their experiences of living with PF with us all.
I hook my hose on a shower caddy as well, although I haven’t mastered showering with oxygen yet, that is for sure 🙂
Happy Earth Day to you too! Check out the picture that I snapped last night as I walked out on the pier of beautiful White Rock BC for my last night of vacation on the west coast. Someone had drawn this in the sand as the tide went out, and we watched the sunset while taking pictures. It was magical!
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Hi Charlene. My Dr. Has spoken of the new ‘Super Pill’ he had information on. He hasn’t suggested I go on it yet, but unless there were worse side effects I think I would give it a try for sure. I just was released from a hospital stay of 4 1/2 day stay – fluid on my lungs. It was thought I had pneumonia but there was no raised white cell count, so another X-Ray of lungs and Cat Scan showed it was fluid. Lasix, the water pill gave me exercise and lowered the fluid on the lung. I feel so much better. Can actually do some minor house work.
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Hi Joyce,
I am so glad to hear from you, I’ve been thinking of you and wondering how you’re doing. I’m so sorry to hear of your recent hospital stint, but am glad that you are home now hopefully able to rest and recoup more comfortably. The “super pill” you’re referring to, is this the new 801mg of Esbriet? We may have talked about this before so if we have and I’ve forgotten, please do forgive me. Or, are you referring to the lasix pill but taking it on the regular? I am really glad to hear that it has worked for you in getting rid of the fluid on your lungs. Did they say why this happened, infection or something? Hopefully it isn’t a regular occurrence for you!
Take good care and thanks again for connecting. I am glad you’ve been discharged from hospital 🙂
Best,
Charlene.
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Donald really sounds very positive of the new Esbriet!! I am going to talk it over with my Respiratory Physician for sure. Sounds very positive. Thanks, Donald. My latest stint in hospital gives me the urge to keep on trying harder.
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We’ll all be there to encourage you to keep on trying harder Joyce!
I am also very thankful for Donald’s informative post, and hope others benefit from the information about the 801mg tablet of Esbriet. Do you mind letting us know what your doctor’s thoughts/opinion is on it when you have that conversation Joyce?
Hang in there!
Charlene. -
Hi Charlene. I was referring to the ‘new’ Super Pill. I am on lasix daily and so far it has been keeping the fluid down in my lungs. I may have had a medication problem due to not understanding the Dr.s orders. Now it appears to be straightened out. I see my reg. Dr. On Monday so won’t find out about the Super Pill till I see my Respiratory Specialist in June. I will keep in touch. Have learned a lot of good skills from this Forum. An excellent site for pertinent information.
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Hi Joyce,
Great to hear back from you, and I hope you continue to be on the mend while resting comfortably at home!
Thanks for providing that clarification for me re: the super pill. I’m also glad to hear that the lasix is doing its job for you! Do you have any other side effects with the lasix? I know sometimes it can cause swelling in other parts of the body / joints, or at least that was a family members’ experience with it due to a different disease than PF.
Glad to hear that the medication error was sorted out for you, I know it can be overwhelming to manage medications, dosages, etc periodically. I hope your appointment goes well with your respiratory specialist in June. I also see mine in a few weeks!
I agree, this site has really been filled with so much helpful information based on other patient experiences. I find it a lot more informative when others share their experience, as opposed to reading it verbatim on a website. I’m so glad you find it helpful 🙂
Take good care!
Charlene.
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Sheila,
I am at the very early stage of IPF (diagnosed 12/2017) but have experienced acid reflux that has interrupted my sleep. Tums has worked but more effective has been Prilosec taken in the morning.
When I first met with my Esbriet Support Team Clinical Coordinator he mentioned that he takes a Prilosec once each morning. What I have found works for me has been taking one every other morning or once every third morning. If I haven’t taken one for a few days and feel an acid buildup, I’ll take one at whatever time of day the symptom arises. The discomfort associated with the acid usually subsides within an hour.
Kind regards,
Al
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Hi Al,
Thanks for sharing this information with us! I’m going to have to look up what Prilosec is, I’ve actually never heard of it in Canada but I’m assuming it is an anti-acid similar to Tums. I’ll do a quick search on it to learn more, especially if it is more effective for you than Tums is! Thanks for sharing this tidbit of information with us 🙂
Charlene.
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Hi Delores,
Thanks for sharing your experience, although I know receiving a number within a prognosis for this disease is hard to hear. Was this your pulmonolgist or respiratory specialist that shared this with you? An important piece of advice or information to remember is that this is just a number, and may not be applicable to you. Unfortunately I’ve known who did live within those years, but others who have lived far beyond that. One of our members on here is on 19 years with her disease. Remember to always hold onto hope (although I know this is easier said than done, sometimes) 🙂
Charlene.
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Has anyone ever heard of PAMREVLUMAB. They said it slows fibrosis progression, improves lung function in IPF, Phase 2 trial shows. PAMREVLUMAB was developed by a San Francisco based FibroGen targets a specific factor called connective tissue growth factor (CTGF) known for its role in promoting fibrosis progression related diseases, including IPF.
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Hi Delores,
Wow, thank you for sharing this information! I’ve never come across this or heard of it before but there are lots of members of our forum who might have as they research options for IPF thoroughly. Has anyone else ever heard of this? I’ll look more into it to see if I can find anything of interest to share widely with the forums. Did you come across this information online? Just curious as I’ll start with a literature search online.
Thanks for sharing and I look forward to hearing from others if they’ve heard of this and/or have more information on it.
Warm regards,
Charlene.
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