IPF How To Cope with Sick Feelings

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 .

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.

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.

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

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.

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.

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.

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

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.

@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.

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