IPF How To Cope with Sick Feelings

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.

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.

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

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.