what is the lung fibrosis treatment?

Question

the doctor gave cortisone as medication for that, but cortisone has side effects.

any one has experince with that, is there natural treatment

known as pulmonary fibrosis

how much time is some one expected to live

my current breath level is 60 normal is 90

do you recommend to start taking oxygen at night from now

currently i go to work i feel good. but i want to stop it from growing

the doctor said he can not take a sample from lung to do checks, since he can not guarntee if i can handle it

Answer 1

Steroids are the most common treatment for pulmonary fibrosis. Many doctors prescribe prednisone because of the inflammatory nature of the disease, but in most cases (as you have indicated) the side effects cause more damage than prevent. There are some experimental treatments available, but they are extremely expensive, most are not covered by insurance, and the mortality rate seems about the same in spite of the treatments. There are many websites out there that promote herbal and natural treatments, but no studies indicate these are valid, and they end up taking your money without providing much benefit.

I have IPF. I do not take steroids anymore. I do take zinc and selenium supplements. I also take ibuprofen for inflammation and pain, and Lasix to help control the edema that comes with lung disease. I try to walk 2 miles every day and use supplemental oxygen when walking or doing any exercise. I also use oxygen at night from a concentrator hooked up to a CPAP.

The secret to this disease is to stay as active as possible. Your activity level is going to decrease a little bit every day, but you have to keep trying to stay active. I also moved to sea level (more oxygen in the air I breathe) and away from the pollution of the city. The healthier environment, coupled with steady exercise has done more to keep me alive than any other medicine my doctors have tried. Also, if you smoke, you must quit. It is only speeding up the process.

Sadly enough, all of us with this disease are going to die from it. While lung transplantation is an option, it is still at a point where survival rates after one year are not what I consider optimal. Lung transplantation is really expensive and it carries its own set of problems. There is no magic cure, no magic bullet for this disease. There is only a positive attitude, taking good care of yourself, minimizing your exposure to colds and flu, and staying as active as you can. I hope this helps a little. For more info, go to:

www.pulmonaryfibrosis.org
www.coalitionforipf.org

ADDITIONAL INFORMATION:

how much time is some one expected to live
The average life expectancy after initial diagnosis is 3 to 5 years. I had an x-ray in 1997 that showed I had the disease, but it was missed by that doctor. When we reviewed that chest x-ray in 2003, the doctor spotted it right away. That means I have had active disease since 1997, or almost 10 years. Just goes to show that nobody really knows how long you will live.

my current breath level is 60 normal is 90
If you are talking about your pulse oximetry, that is really low, especially at rest. If you are talking about your lung function, 60% is where I am at and you should consider having supplemental oxygen when you exert yourself because that number will go down with exertion.

do you recommend to start taking oxygen at night from now
You need to discuss this with your doctor. If your doctor thinks it will be beneficial, then by all means do so. Keep it around 1 or 2 liters, but it will help your body heal.

currently i go to work i feel good. but i want to stop it from growing
You are not going to stop this from "growing". It will eventually lead to respiratory failure or heart failure. There is nothing you can do to stop the progression, you can only learn to live with it the best you can.

the doctor said he can not take a sample from lung to do checks, since he can not guarntee if i can handle it
Here are the different Lung biopsy procedures?

Bronchoscopic Biopsy Procedure

Needle Biopsy Procedure

CT-guided needle lung biopsy

Open Biopsy Procedure

Mediastinoscopy

Video-assisted thorascopic surgery (VATS)
I had the open chest biopsy, but several of these are not as invasive. To get a definitive diagnosis, you have to get the biopsy. Perhaps the bronchoscopic or needle biopsy would be the best route. If your doctor is not a pulmonary specialist, you need to go to a different doctor. If he is, but is reticent to do one of these procedures, consult with a surgeon. My pulmonary doctor did not do my biopsy, I was referred to a pulmonary surgeon and then he consulted with my pulmonary doctor after the results came back.

Answer 2

hi,
i am suffering from interstitial pulmonary fibrosis (for 2 & 1/2 years)
i was in the hospital for 30 days, 11 of which were spent in a coma in icu.....when i was admitted to the hospital my pulse oxygen level was 71%, which from what i have been told is almost dead.....when i was discharged i was on a very high level of prednisone (60mg per day) and a drug called cellcept (which my pulmonary md prescribed to keep my lungs from being so stiff) and for the last couple of years i have been on 3 liters of oxygen 24/7... this experience has been the worst of my life.

now, there are 2 different types of pulmonary fibrosis==i have the interstitial pulmonary fibrosis which most people semi recover from.....there is also another kind called ideopathic pulmonary fibrosis...which most people only last from 3 to 5 years....you need to ask your doc what type you have. in the meantime do some searching on the web.....go to pulmonary fibrosis.com and it will tell you everything you need to know about this disease.

i really want to wish you the very best of luck with your disease and may God bless and keep you safe and healthy for the rest of your life......................luv, Sweetness#1

Answer 3

The information you have received is good, but how confident are you in the diagnosis. How old are you? If you are under age 50, I might wonder if the diagnosis of "idiopathic pulmonary fibrosis" is even correct. Did you have a lung biopsy? Was it interpreted by an experienced pulmonary pathologist?