Mayo Clinic Connect
Is there any one out there that has PF?
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.
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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.
Liked by Ballred
Thanks for the info. Have you run into any aid for helping with the costs
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.
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 9×3 now 6×2 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.
Liked by 1rosella
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.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
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.
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.
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?
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We’ve tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can’t figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that’s all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I’m not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I’ve fractured my ribs 5 times in two years because of it (I’ve learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven’t a clue why that is). I’d be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I’ve snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it”s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it’s to good to be true……..). So with all this said, I do my best to try and control it as my as it control me.
I am a newbie to you guyz thread, and the malady. Its terrific to read about your never ending positive attitude, Steve! I was diagnosed with interstatial pulmonary fibrosis after a CT scan in Oct ’16 for a hernia; the scan also revealed fibrosis. I didn’t know about it until I read mychart on the web about interstatial PF on Dec 26,’16. I did as much internet searching as possible about this shocker. Saw our family doc in early Jan ’17. He and I looked at the CT, and I saw those ‘lines’, should I say, at the bottom of my lungs. My research gave me one possible cause: I told doc that for the past maybe 5 years or so I have told friends “I know now how I will die; I will choke to death.” For 5 years I now realize I have been inhaling when shoveling food into my mouth. Once in a while, some must be going down my ‘wind pipe’, and into my lungs, and then I cough very hard for maybe 3′, often leaving the table. Why I inhaled while feeding I have no idea. I now try very hard not to do this, and haven’t choked for 3 months. Since none of us know each other, I will also admit I used to, for maybe the last 15 years, try and keep my weight down by occasionally barfing up meals where I ate way too much, which also occasionally made me choke for a couple minutes. False pride and basic male idiocy overcoming discipline. I no longer accomplish this feat, either. Another aspiration story: I have suffered reflux for more than 10 years. Occasionally I am waked up at 2am by a half teaspoon of hydrocloric acid rising into my mouth, for example. I was never careful about my diet, and used a prescription, tablets and baking soda to hold the reflux down. I am now trying to eat less food at one sitting especially at supper, and less acid causing foods. And I love chocolate, tomato sauce, and all the other Bad-for Me foods. Hoping against hope, some research says aspiration (food getting into the lungs) may be causing some Interstatial PB, and until I am convinced my condition is ideopathic (unknown cause) fibrosis, I’m sticking with my story. 😉 So far, I think I am symptom free. I speeded up the pace of my 3 miles/day walks with no wind problems, plus no cough. But, do any of you have very slight nausea in the mornings, like I do, that goes away after coffee? Not a symptom listed for our malady.
I am glad I am now in this group. I felt better after reading the whole thread. I also feel better that the “wondrous, much better health care bill” failed to even get a vote yesterday. Plus, now they don’t know where the money for the huge tax cuts for the top 1% is going to come from, which the huge ‘great health bill’ money cuts was supposed to provide. (Sorry, I couldn’t help it, folks)
Welcome @nomi. Thanks for introducing yourself to the group and sharing your story. Good for you for keeping up the walking and even speeding up the pace.
@steve1948 @llwortman @kelloggk and @agullotti will you join me in welcoming Nomi?
research site -has a lot of info egardng IFP
My name is Larry – I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
I was diagnosed with IPF in may 2016 I cannot hardly do anything I walk my dogs a half block on 4 liters o2 and I still have to walk slow and need to stop to do deep breathing I don’t understand when I read people exercise am I doing something wrong ?
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
Have you been diagnosed with mild moderate or severe IPF?
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