IPF How To Cope with Sick Feelings

Posted by vaugen @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?

@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

I understand your confusion and concern. Unfortunately I don’t think your situation is uncommon. My advice is to meet with your pulmonary doc and voice your concerns. Currently there are only two medications approved for IPF. Neither of these will cure the condition, they will slow the progress.
The most important step for you is to find a pulmonary specialist that is familiar with IPF and that will listen to you and answer your questions.
There is a lot of research going on regarding IPF with several promising candidates. mayo clinc has a good reputation for treatment of pulmonary issues. Sometimes you have to take charge of your treatment. Contact the hospitals patient representative and let them know your concerns and let them help you.
Walking is a good excerise and can be difficult but is worth the effort. Ask your pulmonary about pulmonary rehab. They can be a help to teach you better ways to breath.
Hope you find the answers you seek.

REPLY
@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

Ray I have tried the one on one with may pul doc but he says my afternoon fatigue drain and muscle aches etc are not result of IPF. i walk 1 to 2 miles a day 10 to 15 minutes at a time on flats and climb stairs for leg work. i will try to get appt at PHX Mayo as i feel they may have a different evaluation. at my doc i walk less than 1 minute on flat and 7 low grade steps then he evaluate from that.
good luck with your progress hope you get some relief

REPLY

I feel the same every day every muscle aches and joints my feet and ankle joints even hurt I’m tired and on 4 liters of oxygen when active and I still will get out of breath and have to stop and do breathing exercises I was in cellcept that shut my kidneys down to 50 percent working and I tried imuran and I was deathly ill throw up unable to eat and barely could keep liquids down for 6 days I won’t take either one again I’m at a loss I’m in so much pain and the doctor does nothing I’m going to keep on hanging in there you too it’s hard

REPLY
@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

Yes I tried cellcept and that shut my kidneys down to 50 percent in 3 weeks then I tried imuran which after taking for 5 days made me deathly ill unable to eat and barely could keep liquids diwn for 6 days I’m unable to even walk around the block on 4 liters of oxygen I have to walk slow and stop and do breathing exercises because I still get out of breath and dizzy sometimes the new problem is the muscle and joint pain

REPLY
@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

if the Doc says that your tiredness and joint pain is not IPF related, he should refer you to specialist that can figure out what is causing the afternoon problems. I have had IPD doe approx 5 years and take Esbert for the las year. I feel that it has helped me with breathing and other IPF problems. You might want to try it.

REPLY

None of those drugs are recommended for treatment of IPF. There are only two that have been approved for treatment. Neither should cause the problems you have outlined. They could be caused by some of the other drugs. You should discuss your symptons and drug history with a clinical Pharmacist .

REPLY

Cellcept is a drug used to help prevent rejection of various organs. It is not a recommended treatment for IPF. It would not make any sense to give this drug to you.

the most common side effects include: diarrhea, vomiting, pain, stomach area pain, swelling of the lower legs, ankles and feet, and high blood pressure.
These are not all of the possible side effects of CellCept. Tell your doctor about any side effect that bothers you or that does not go away.

IMURAN is indicated as an adjunct for the prevention of rejection in renal homotransplantation. It is also indicated for the management of active rheumatoid arthritis to reduce signs and symptoms.

as you can see, neither of these drugs would do anything to help IPF. The symptoms are similar for both, they both cause fatigue, and other symptoms. My advice is to discuss these with you Pulmonary doc.

REPLY

N-acetylcysteine (NAC): NAC is a naturally occurring anti-oxidant. In the past, it was thought that NAC could help protect the lung from “oxidative injury” that occurs in some forms of PF. In 2014, a clinical trial found that NAC did not have a substantial beneficial impact in IPF.

Nintedanib (Ofev®): Nintedanib is an anti-fibrotic drug that is approved to treat IPF in the United States. In clinical trials, nintedanib has been shown to slow the decline in lung function in mild-to-moderate IPF. It is taken by mouth twice a day.

Pirfenidone (Esbriet®, Pirfenex®, Pirespa®): Pirfenidone is an anti-fibrotic and anti-inflammatory drug approved to treat IPF in the United States, EU, Canada, and Asia. In clinical trials, pirfenidone has been shown to slow progression of mild-to-moderate IPF. It is taken by mouth three times a day.
I take have taken Esbriet for he past year. My test with my Pulmonary Doc have shown very little change over the past year.

REPLY
@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

Sorry it took so long to reply. I live in Cedar Rapids,IA. I go to the University Of IA for the research program.

REPLY
@tula

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.

Jump to this post

I have taken Esperit for the past year and my tests have shown very little change in my condition. You should discuss this with your Pulmonary doc. A study i read a few days ago found that patients on Espreit for a year tend to live .2.5 years longer than people that are not on medication. There are several new studies regarding drugs that show promise in treating IPF in progress in the UK and another in Australia. The sooner you get treatment, the better you chances of a cue are.

REPLY
@rayhastings

Sorry for the typos. my keyboard keys are sticking.

Jump to this post

check out this site. https://www.phassociation.org/AboutPH. it is the home of the support group for pulmonary hypertension and should have plenty of information to help you better understand what is going on and what your future might be like.

REPLY
@rayhastings

Sorry for the typos. my keyboard keys are sticking.

Jump to this post

That was a typo, sorry. should have been portable oxygen concentrater. .i bought one of the smaller ones that is easy to travel with and especially on plans.

REPLY

I have just been diagnosed with IPF. As the saying goes, “I’ve got a lot of living to do.” I am not ready to die in 3 to 5 years, as too many of the statistics state. I want to try everything possible to live a few more years. I am willing to try Esbriet, but I need to get on some type of research project or be awarded a grant. With my Medicare and my insurance, I would still need to pay an additional $2,800 a month. Undoable for a retired teacher. I have “down days.” These are days when I am so tired that all I can think about is sleeping, reading, or lying on the couch to watch movies, one after another. Even on good days, I don’t have a lot of energy and I ache in my joints and my muscles. My energy gets spent easily. I do have interests in collecting teddy bears for orphanages in Ukraine, making jewelry, reading. All of these activities are sedentary so I realize that I need to add some exercise to my days. Doing the dishes and sweeping the floor is not what I have in mind as far as physical activities. I also have osteoarthritis in my lower spine so I can stand or walk for up to 15-20 minutes. Past that I’m in too much pain. I want to be the cheerful, optimistic person that I have always been in my life. I used to think nothing of rearranging my livingroom and painting the walls in a weekend. Those days are gone. I need to look forward to more activities in my life. I have a caring caregiver. I am 63 years old. I am generally sad. And… I need to get out of this slump. I hope that by getting on a website like this I can hear from others in similar circumstances. Who knows, maybe I could even help someone else. I hope so. Thank you for reading this, Ann Kathleen

REPLY

Hello @annabeyta,

I’d like to welcome you to Connect, and sincerely thank you for sharing your story and your thoughts; we are so happy that you’ve joined us.

We have a few discussions on IPF and pulmonary fibrosis that might interest you:
Stem cells for Pulmonary Fibrosis: http://mayocl.in/2s0BVfW
Pulmonary Fibrosis: http://mayocl.in/2nbVlMF

And, while we wait for others to join the conversation, I think you might enjoy watching these stories shared about the Harmonica therapy and the Breathless Choir for people with lung disease.
http://mayocl.in/2nsjVuI
@annabeyta, I also want to let you know that you’ve discovered what Connect is all about: a community of incredibly supportive people, many who share your journey, and help each other along the way with their shared experiences, questions, insights, suggestions and tips…just as you have done with your first post.
So do keep talking…we’re listening.

REPLY
@annabeyta

I have just been diagnosed with IPF. As the saying goes, “I’ve got a lot of living to do.” I am not ready to die in 3 to 5 years, as too many of the statistics state. I want to try everything possible to live a few more years. I am willing to try Esbriet, but I need to get on some type of research project or be awarded a grant. With my Medicare and my insurance, I would still need to pay an additional $2,800 a month. Undoable for a retired teacher. I have “down days.” These are days when I am so tired that all I can think about is sleeping, reading, or lying on the couch to watch movies, one after another. Even on good days, I don’t have a lot of energy and I ache in my joints and my muscles. My energy gets spent easily. I do have interests in collecting teddy bears for orphanages in Ukraine, making jewelry, reading. All of these activities are sedentary so I realize that I need to add some exercise to my days. Doing the dishes and sweeping the floor is not what I have in mind as far as physical activities. I also have osteoarthritis in my lower spine so I can stand or walk for up to 15-20 minutes. Past that I’m in too much pain. I want to be the cheerful, optimistic person that I have always been in my life. I used to think nothing of rearranging my livingroom and painting the walls in a weekend. Those days are gone. I need to look forward to more activities in my life. I have a caring caregiver. I am 63 years old. I am generally sad. And… I need to get out of this slump. I hope that by getting on a website like this I can hear from others in similar circumstances. Who knows, maybe I could even help someone else. I hope so. Thank you for reading this, Ann Kathleen

Jump to this post

Dear Anna: Pretty name ! I am a 9 year 5 month non small cell lung cancer survivor. I am alive because I was properly diagnosed at Mayo Clinic. Shockingly, I never smoked. During VATS procedure to remove my left lung and a 3cm tumor It was discovered I also had PF and part of my lower lung was also removed!
I had horrible pain for 2 years pre surgery & proper diagnosis. Local doctors dimly were not aware that an athletic never smoker could have lung cancer. Some suggested my choking cough was psychological.
After surgery I have lived with the unfair stigma, that simply just made me so mad, I started running, after I had the honor and pleasure of completing a Mayo Clinic Paced Breathing 3 month Research Study.
1- I do not believe anyone knows for sure how long a person will live. A life insurance company told me “Acvording to statics (at my 5 year survival celebration) You should be dead!” & my policy was cancelled!!!
I set a new goal, after running a 5K race in every state…to run a 10k in every continent! August 2016, I summited Kilimanjaro at 19,361feet altitude without any supplemental oxygen.
After lung cancer surgery I took baby steps and it hurt to breath
I couldn’t sleep, walk, talk without taking a breath!
My loving husband tied my shoes when I couldn’t bend over, and said, “You belong outdoors, let’s go!” I could barely move, I walked heel toe heel toe.
I got on an elliptical machine, I got back on x country skis. I called my sergical team and said,”it hurts to breath!” Spring came I got back on a bike.
Yes it was scary ! But with Mayo Clinic amazing support teams I now believe Lung Cancer and lung disease has been my blessing.
My husband have recently started a foundation to raise Lung Cancer & Lunh Health Awareness.
You have found an amazing network of support. The resources are priceless and support Quality Of Life!
We never know what is around the corner do we?
Anna, I admire and respect your goals and ambitions as you have shared. Get a second opinion, like I did! It saved my life and I have learned how precious living one day at a time with gratefulness and kindness truly is.
You bet, you can help others! It looks like Your heart is in the giving place ! Go for it! And welcome to Connect, the people are wonderful!
You deserve a big cyber hug! Thanks for sharing.
linda

REPLY
Please login or register to post a reply.