hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.
I've been on Esbriet going on my third year, on one or two occasions I did have some sun sensitivity (while golfing) but wearing a hat cured that. My biggest problem is the acid indigestion (or heart burn) I get from taking it (9 capsules a day). You should eat before taking it, but for me the one and only sure thing I can do to alleviate that side effect is a shake with a banana in it. Whether it be a half or whole banana. I mix it with milk and my protein powder. Other than that I haven't had any of the other side effects. it is a very expensive medication, because of it being fairly new still. Have to wait for the patent protection runs its course before the price will come down.
I would so love to run again, I used to run 6 miles a day 6 days a week, just climbing one flight of stairs winds me so very much. I meditate on occasions however I haven't got to the level of taking deep breaths yet (when I do I begin to cough). thanks for the input, I'll continue to work on it.
Great work at attempting stairs! You are amazing.
My Asthma/Allergy Doctor and I just had a conversation about climbing stairs. (I love the challenge) He said, Stairs are the toughest exercise! A team of doctors climb four flights together and they are all panting!
Oh, I also cough when I do stairs; and after a race I cough for a few days. I look
at exercise as my "lung cleans". Ha!
But, please check with your doctor!
I admire your lung fortitude. Keep up the great attitude. You inspire me.
Linda
hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.
hi Arty, I read they started you @ 60mg Prednisone I never had more than 40mg. along with Imuran (sp)plus 2 litre 02 to sleep. two yrs later Esbriet 9x3 now 6x2 reduced to adjust for sensitivity to Sun I had zero nausea or diareha.med for acid reflux for sure!lots of O2 for me 5ltrs full flow on the Oxygenerator.nothing but Esbriet for 2.5 yes very pleased with results ,little coughing,little mucous, lots of sleep. oliver 22 this thing is liveable with lifestyle changes including difficulty flying!.Sent from AOL Mobile Mail
Thanks for you reply. I am not very pleased with the pulomolist at the local hospital. They told me one thing and did something else. That is why I am going to mayo next month. I have begun to send all my tests and results to mayos pulmo dept and I will be contacting them the first of the week to see if they want me on this much steroids. Glad to here about the side effects aren't too bad.
Hello, Esbriet has web.site & u can get info from ur prescribing doc-pulmonologist, there is assistance if your income is below $250,000 or a ridiculous amt. most folks don't even come close to.<br>My diagnosis is very recent and info is out there; will share as I get new sources. Take care and know we have more help now than ever before, share your info, say a prayer or more and never give up or lose hope. @tula on Mayo Connected<br><br>
yes, I was diagnosis 2 months ago with IPF mild, wonder how fast this disease progresses? Seeing a pulmonlogist in 2 weeks, had a cat scam for my diagnosis, have a cough and seem to have a lot of mucus is this normal? Would like to talk with others with this condition.
Hi Kelloggk:
It's great that you will been seeing a pulmonologist in two weeks,you made a good decision to set up this appointment. This appointment will answers a lot of your questions. Let's keep connected, it's so nice that you reached out to talk with others.
Linda
Thanks for you reply. I am not very pleased with the pulomolist at the local hospital. They told me one thing and did something else. That is why I am going to mayo next month. I have begun to send all my tests and results to mayos pulmo dept and I will be contacting them the first of the week to see if they want me on this much steroids. Glad to here about the side effects aren't too bad.
Hi aggulloti: I was in the same situation as you with a limited local practice. Mayo gave me answers and I continue to
Have a great quality of life because of their amazing teams. So glad you reached out to connect. Will you please keep us updated?
Linda
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I've been on Esbriet going on my third year, on one or two occasions I did have some sun sensitivity (while golfing) but wearing a hat cured that. My biggest problem is the acid indigestion (or heart burn) I get from taking it (9 capsules a day). You should eat before taking it, but for me the one and only sure thing I can do to alleviate that side effect is a shake with a banana in it. Whether it be a half or whole banana. I mix it with milk and my protein powder. Other than that I haven't had any of the other side effects. it is a very expensive medication, because of it being fairly new still. Have to wait for the patent protection runs its course before the price will come down.
-
Like -
Helpful -
Hug
1 ReactionThanks for the info. Have you run into any aid for helping with the costs
Great work at attempting stairs! You are amazing.
My Asthma/Allergy Doctor and I just had a conversation about climbing stairs. (I love the challenge) He said, Stairs are the toughest exercise! A team of doctors climb four flights together and they are all panting!
Oh, I also cough when I do stairs; and after a race I cough for a few days. I look
at exercise as my "lung cleans". Ha!
But, please check with your doctor!
I admire your lung fortitude. Keep up the great attitude. You inspire me.
Linda
hi Arty, I read they started you @ 60mg Prednisone I never had more than 40mg. along with Imuran (sp)plus 2 litre 02 to sleep. two yrs later Esbriet 9x3 now 6x2 reduced to adjust for sensitivity to Sun I had zero nausea or diareha.med for acid reflux for sure!lots of O2 for me 5ltrs full flow on the Oxygenerator.nothing but Esbriet for 2.5 yes very pleased with results ,little coughing,little mucous, lots of sleep. oliver 22 this thing is liveable with lifestyle changes including difficulty flying!.Sent from AOL Mobile Mail
Thanks for you reply. I am not very pleased with the pulomolist at the local hospital. They told me one thing and did something else. That is why I am going to mayo next month. I have begun to send all my tests and results to mayos pulmo dept and I will be contacting them the first of the week to see if they want me on this much steroids. Glad to here about the side effects aren't too bad.
-
Like -
Helpful -
Hug
1 ReactionHello, Esbriet has web.site & u can get info from ur prescribing doc-pulmonologist, there is assistance if your income is below $250,000 or a ridiculous amt. most folks don't even come close to.<br>My diagnosis is very recent and info is out there; will share as I get new sources. Take care and know we have more help now than ever before, share your info, say a prayer or more and never give up or lose hope. @tula on Mayo Connected<br><br>
Thanks for the info
yes, I was diagnosis 2 months ago with IPF mild, wonder how fast this disease progresses? Seeing a pulmonlogist in 2 weeks, had a cat scam for my diagnosis, have a cough and seem to have a lot of mucus is this normal? Would like to talk with others with this condition.
Hi Kelloggk:
It's great that you will been seeing a pulmonologist in two weeks,you made a good decision to set up this appointment. This appointment will answers a lot of your questions. Let's keep connected, it's so nice that you reached out to talk with others.
Linda
Hi aggulloti: I was in the same situation as you with a limited local practice. Mayo gave me answers and I continue to
Have a great quality of life because of their amazing teams. So glad you reached out to connect. Will you please keep us updated?
Linda