Pulmonary fibrosis symptoms and conditions

My husband has pulmonary fibrosis and has been on prednisone since June 2008. It worked wonders for him and he was able to function normally; he started at 60 mg. He has slowly been coming down off the prednisone and is currently taking 1 mg. Since he got down below 20mg he has been losing energy and ambition and interest; he is terribly weak and any little exertion has him gasping for air; his legs are so weak he can hardly walk and only for a short time. He does not sleep during the day but does not sleep much at night either. We know these effects are the result of coming off the prednisone but I'm wondering how long the effects will last.

I started taking prednisone along with Cytoxan, a chemotherapy drug 15 years ago when I was diagnosed with an undifferentiated connective tissue disorder that led to symptoms like idiopathic pulmonary fibrosis. After a couple of years, the inflammation cooled off and I no longer had increasing scar tissue in my lungs (IPF is almost always terminal) so I was glad of that. However, sometime in that first year or so I developed hardish lumps under my skin and severe pain that felt like it was "under my skin" but not my muscles, as in fibromyalgia. The lumps are even more painful, and the skin feels as if someone tried to "skin" me and then just llay the skin back down.
I have had to be on timed-release morphine for years in order to function with this pain, as it is especially painful if I brush up against something or sitting or lying down pressure is intense. Also the skin on my tongue gets so tender I have to use kids' toothpaste or it burns terribly.
After 15 years some of the lumps have gone away, but I've recently had to go back on the prednisone for my lung inflammation.
The last time I got a new prescription for prednisone I read the tissue-paper printout (not the short one you get with every Rx, the one written for professionals which includes all the new data, tests, side effects, etc.) What I want to point out, as I've not read one person saying this, is that to avoid a lot of the side effects and the harm to the glands which produce our own natural steroids, is that they are now recommending that it is taken only EVERY OTHER DAY. They say there may be some slight increase in symptoms on the "off" day, but that this keeps the natural cycle in place in bodies subjected to this drug and therefore reduces symptoms.
This is what my last pulmonologist prescribed for me and so far I have had minimal side effects--no ravenous appetite and weight gain, no "moon face" and it has still helped my symptoms.
Please ask your pharmacist for the flyer that comes with the new package and read this for yourself and then take it to your doctor. It may not work for those in dire need of the prednisone but could perhaps be tapered to this once the first lethal symptoms die down. ASK YOUR DOC--I cannot believe I have not heard more about this as it's right on the flyer--but docs are so busy, it's understandable. I'm grateful my doctor is up on the new research because I don't mind taking the prednisone this time, and I used to HATE it!
Good living to all and I wish you all the healthiest life possible.

My husband, age 74 has Macrodantin induced Pulmonary Fibrosis, which will soon cause his death.

Prednisone is a miracle drug that is saving my life. I realize that the side effects can happen and do. I've experienced them too: pockets of fat on my face even though I've lost 25 pounds; loss of hair; Thrush in the mouth and other yeast infections; hyperactivity; insomnia; blurry vision; the shakes; reduction in muscle tone; and secondary infections because of compromised immune system. I have pulmonary fibrosis and waiting for a lung transplant. There is no known cause, cure, or treatment of this terminal disease and most patients die in 1-5 years. Prednisone is the only drug that will at least slow the disease down until I receive that transplant call. I realize that most people on this post are not terminally ill and you can say, "no" to this drug; but just wanted you to know that for some of us it's a miracle drug.
Di

It's scary in here...lol..Mixed Connective Tissue Disease, Primary Biliary Cirrhosis,Pulmonary Fibrosis, Sjogrens. Yes, it makes you feel better, especially at the beginning when the side effects aren't there. But MAN, does any body else feel like SCREAMING? LOL. I look like an entirely different person. Been on it for one year. Not even a large dose. My weight has just kept on coming. I think there is an alian in my stomach. And I think someone has inflated my upper body with something. Swollen, bloated,uncomfortable, fatigue, weakness, etc,. Do you eat like it's your last meal on earth sometimes????? Like some primative instinct separate from common sense. Some days I feel like it's the end of the world. But we'll make it. All of us.

I have been on prednisone taper for about five months, starting at 40 mg for six weeks, and then tapering to 30 mg for six weeks, 20 for six weeks, and I am now down to 15 mg for macrodantin induced pulmonary fibrosis. I have had weight gain, bloating moon face, muscle cramping, hair loss, and mood swings. I will be glad to get off this drug, although it has helped me a lot. I also have hypersensitivity pneumonitis, and it does not help much for that. I will just have to move out of the area because I am very allergic to something and cannot find out what it is. The water retention and the moof face are the hardest to take. I also have had back pain since being on this, and I don't know for sure this is a side effect or not. I have heard of others who have had this and when they stopped the prednisone, their back pain went away. I will let you know when I am off in April.