Share this:
vaugen
@vaugen

Posts: 3
Joined: Mar 13, 2017

IPF How To Cope with Sick Feelings

Posted by @vaugen, Mar 16, 2017

I got a type pneumonia in May 2015 an never felt same. I work in a high stress long hours job and in 2016 could not work 4 hours without resting and napping. I August 2016 I suddenly got out of breath climbing steps, mowing doing anything with my arms. I went to ER extensive heart evaluation was fine BUT my x-ray was not good. Had a CT showed PF did all blood tests in Sep the lung Biopsy end of Sep showed I had IPF. I started taking NAC and my ER visit 2 weeks ago shows no change. NAC maybe working??
BUT I have most days miserable. Get tired easy, the feel sick all over (like bad flu), chest feels full and tight, BP high 190/100 then goes down after sleeping, (I sleep 7 hours solid) muscle aches, weak, dizzy etc. My doc says IPF does not cause that. I do not want to take Esbriet cause I feel bad now.
Anyone experience these feelings?

REPLY

Welcome to Connect, @vaugen.
I’d like to introduce to a few members who also have idiopathic pulmonary fibrosis (IPF). Please meet @tula @steve1948 @rayhastings @oliver22 @loisblo @agullotti @kelloggk @raincrowe @lydoff65 @dfay and @myiokubo.

Vaugen, you mention a number of side effects that you’re experiencing. I wonder if they might be a combination of side effects of IPF and/or the medication you’re talking: N-acetylcysteine (NAC). According to the following 2 articles IPF can cause your muscles and joints to ache and NAC’s side effects include tightness in chest, fever, nausea and more.
– Pulmonary fibrosis symptoms http://mayocl.in/2fPg1ds
– Acetylcysteine (Inhalation Route) side effects http://mayocl.in/2ntl8Tp

I also encourage you to read and take part in this discussion on Connect:
– Pulmonary Fibrosis http://mayocl.in/2ntrBxC

Vaugen, did your symptoms appear once you started NAC? Are you on oxygen?

Hi Colleen
Thanks for your reply. I am not on oxygen. I had the aching in legs for 4 or 5 months before starting on NAC and before confirmation of IPF. The NAC did help my dizzy/out of balance episodes. I had chest tightness at very top of my chest since I had the pneumonia in 2015 but now more. I am 73 and walk 1 to 2 miles a day and up and down 15 steps at least 5 to 8 times a day out of breath of course. I quit working in Oct as I could not work full days and the stress made things worse.

Liked by Ballred

i have IPF, dx about 5 years ago. I had been taking Espert for one year. Hard to say if it is doing anything. It is very expensive and the side effects can be nausea, dizziness and feeling tired. I am not familiar with NAC so no heat there.The thing that seems to help me most is light exercise. I have a treadmill and i tr y to get in between 15 – 20 minutes daily. I quit my job last year for the same reasons you stated. I know that my disease is fatal and there is no cure at this time. My wife and i have done a lot of traveling since we stopped working. My feeling i that we will enjoy the time we have left. If a cure is found, then we are ahead of the game.

@rayhastings

i have IPF, dx about 5 years ago. I had been taking Espert for one year. Hard to say if it is doing anything. It is very expensive and the side effects can be nausea, dizziness and feeling tired. I am not familiar with NAC so no heat there.The thing that seems to help me most is light exercise. I have a treadmill and i tr y to get in between 15 – 20 minutes daily. I quit my job last year for the same reasons you stated. I know that my disease is fatal and there is no cure at this time. My wife and i have done a lot of traveling since we stopped working. My feeling i that we will enjoy the time we have left. If a cure is found, then we are ahead of the game.

Jump to this post

Ray,

I take have been Pirfenidone 267mg X6 daily and I can not tell much difference either. It is just supposed to slow down the progression. I try to walk 1.0 hour daily and it helps. I participate in a research program and it doesn’t cost me anything. They pay me a very small amount to participate.

Hi Vaughn:
Colleen always gives such great information. I commend you for climbing those stairs and getting out doors.
I will be following your progress. Thanks for reaching our on CONNECT.
Linda

@rayhastings

i have IPF, dx about 5 years ago. I had been taking Espert for one year. Hard to say if it is doing anything. It is very expensive and the side effects can be nausea, dizziness and feeling tired. I am not familiar with NAC so no heat there.The thing that seems to help me most is light exercise. I have a treadmill and i tr y to get in between 15 – 20 minutes daily. I quit my job last year for the same reasons you stated. I know that my disease is fatal and there is no cure at this time. My wife and i have done a lot of traveling since we stopped working. My feeling i that we will enjoy the time we have left. If a cure is found, then we are ahead of the game.

Jump to this post

Hi Raincrowe:
I would love to know where you are from, what state? I think it is wonderful that you are a participant in a research program.
I have done this since my lung cancer diagnosis and surgery 9 years ago. My involvement in research as a patient really helps
my brain and body relax knowing the researchers find so many amazing wonderful procedures and medications to help us live
a good quality of life. And you get paid a little, thats awesome! Thank you for reaching our to CONNECT.
Linda

Hello, I have not had Espreit yet. Actually just got the diagnosis in Feb 2017; however, a scan from 2012, showed the Interstitial lung disease at the base of the lungs. Do not know the extent of progression from that earlier 2012 -scan. How is that measured?
How did you get in a study, how do I find studies or clinical trials?
I am sorry you have IPF & hope you find relief.

May I ask have you had a second opinion?
The one answer to all of your questions to me,
is Mayo Clinic.
All of mybreath follow up apts are at Mayo Clinic. I am super athletic…with most of my left lung gone. I am healed…but continue to have CT scans at Mayo Clinic. My lung cancer has become my blessing on living. But I live by those follow up apts!
Let’s stay connected.
hugs
linda

frackersI have been see initially at the VA hospital jn New haven CT. From there j as treated at St there j we treated at St Francis Hospital in Hartford CT. I was evualated at Yal HoapiL My wife and I moved to Raleigh NC and was seen at Duke Hospital. they recommended that ice treats at the VA hospital in Raleigh. The eason was that some of the Pulmonary Docs from /duke also work at the VA. and the treatment would not cost me anything,. I have been a to of docs and have had CAtScans from most of them . My IPF is one what different in that most of the time the scarring is on the bottom of the longs but mine is more on the upper lungs,

Most of the time i feel pretty good until ii get an upper infection which I am currently under treatment for. i take medication currently buy it takes a month or so for me to receive. My wife and i have traveled a lot over the past 2 years 4 cruises several trips to Las Vegas. We have been to trips in Mississippi and FL, My advice to people us to try to not let your condition limit your life. I have found that light exercise and rotate oxygen allow me to get around a kit,

It sounds as uf try are not limiting yourself either. I wish you good luck

Sorry for the typos. my keyboard keys are sticking.

@llwortman

May I ask have you had a second opinion?
The one answer to all of your questions to me,
is Mayo Clinic.
All of mybreath follow up apts are at Mayo Clinic. I am super athletic…with most of my left lung gone. I am healed…but continue to have CT scans at Mayo Clinic. My lung cancer has become my blessing on living. But I live by those follow up apts!
Let’s stay connected.
hugs
linda

Jump to this post

I just had first visit with pulmo doc and going to have another cat scan. Feeling more energetic now , try to go to water aerobics every morning, can do this better then walking ???? how did you get on research program at Mayo, we have mayo here and I sure would like to get in a program for the medication is too expensive for me. Praying that nodules in lung has not grown. I also had diagnoses of IPF in 2013, but they said I was ok after medication treatment, wondering if I still had this all these years, slow growing if so. Thanks for caring and keep me posted.

@rayhastings

Sorry for the typos. my keyboard keys are sticking.

Jump to this post

Hi Ray:

Welcome back to Connect, sticky keys is my middle name! Ha!

So great that you have found the exercise that works your lungs and helps you breathe.
I have discovered that when I travel the different allergens, which seem to be many, really
affect my breathing. Non the less, I keep moving, walking, running all of which keeps my
lungs filtering through the challenges we can’t even see! Right?
You have quiet a history with medical facilities, don’t you? The good news is when you travel
many will have your records!
I have been very impressed with Mayo Clinic’s over all care, which includes the medical records
that are available anytime anywhere in the world? Are you being seen at Mayo Jacksonville? If
you are they have a great team of Thoracic and Pulmonary docs! Many people praise them and
they have a great connection with the other two Mayo Clinics RST & PHX as well.

I mention this because, like you, when I get a respiratory infection it can knock me down for the
count and challenge my one lung to the max. I was in desperate need for relief a couple of years
ago and returned to Mayo Clinic RST for a treatment to get me through a horrible respiratory infection
and my doctor called in the Doctor who “invented” the drug that pulled me through.

It’s nice to know there are such great services aren’t we? Great you CONNECTed!

Linda

I was diagnosed with IPF this past May I’m 54 been very healthy all my life I’m so out of breath doing anything and this is with oxygen I take my dogs around the block slow walking with 4 liters of pulse oxygen and have to stop several times to catch my breath I read some of you exercise I’m so confused as to why I can’t do anything and I’ve only been diagnosed a year almost I am currently on no medications I got deathly sick from insurance and cellcept and was in prednisone up until about a month ago I have been experiencing severe muscle and joint pain and my lung doctor did blood work and I don’t have any diseases that would cause that but I’m still having slot of pain I’ve had a really hard time of getting help and answers I’ve been to the u of m and go to the mayo now my quality of life is horrible I can’t walk even with oxygen I’ve gotten a lot worse but the scans only show a small change in scarring I’m very confused and frustrated with the fatal diagnosis and not getting help to feel comfortable I’m at my wits end dealing with this disease it’s all a wait and see game

@kturchin

I was diagnosed with IPF this past May I’m 54 been very healthy all my life I’m so out of breath doing anything and this is with oxygen I take my dogs around the block slow walking with 4 liters of pulse oxygen and have to stop several times to catch my breath I read some of you exercise I’m so confused as to why I can’t do anything and I’ve only been diagnosed a year almost I am currently on no medications I got deathly sick from insurance and cellcept and was in prednisone up until about a month ago I have been experiencing severe muscle and joint pain and my lung doctor did blood work and I don’t have any diseases that would cause that but I’m still having slot of pain I’ve had a really hard time of getting help and answers I’ve been to the u of m and go to the mayo now my quality of life is horrible I can’t walk even with oxygen I’ve gotten a lot worse but the scans only show a small change in scarring I’m very confused and frustrated with the fatal diagnosis and not getting help to feel comfortable I’m at my wits end dealing with this disease it’s all a wait and see game

Jump to this post

Welcome @kturchin,
I completely understand that you are confused and frustrated at being handed this diagnosis and not getting help to feel comfortable. I’m turning to other Connect members to help answer some of your questions. @timfair @steve1948 @loisblo @raincrowe @nancyligon @rayhastings @inspiration @oliver22 @agullotti and others have written about living with IPF and many of them have written about the importance of exercise. You can read more in this discussion:

– Pulmonary Fibrosis http://mayocl.in/2oiU4mX

Kturchin, Just to clarify, you said that you are currently not taking any medication for IPF, but that you are on oxygen. Did I understand correctly? You most troubling symptoms are fatigue and breathlessness, as well as muscle and joint pain, right?

@rayhastings

Sorry for the typos. my keyboard keys are sticking.

Jump to this post

Hi Ray, what do you mean by rotate oxygen? Do you have any info on pulmonary hypertension and how soon it can become
Severe; it was mild three months ago, I do not have heart disease and my oxygen needs have gone to 6 ml for activity and. lower when sitting. Perplexing at best. Thank you for listening.

Please login or register to post a reply.