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Discussion:
Prednisone for Pulmonary Fibrosis
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Tell us about your personal experience with Prednisone as a treatment: Has it worked? Have you had any issues? Any recommendations or tips?
Posted on 10/12/06, 08:00 am
11 Replies | Most Recent Add Your Reply
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Reply #1 - 03/14/07  3:20am
" Doug I am now on predisone and it has a few side effects, I am unable to sleep most of the time, when I do it is only for a few hours at a time, I heard voices to begin with and was extremely irratable with everyone, my kidneys are hurting now so when I see the Dr he may make some changes, I am also at a higher risk for infection now so I am careful not to go to stores and avoid children with runny noses. The Pulmo in Birmingham says that if this does not work then he will try alternative meds, we will see. I will keep you posted. "
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Reply #2 - 04/24/07  2:52pm
" My husband just came back from the vetrens medical clinic, his dr put him on prednisone 40mg for 14 days, then 30, then20, then 10 a day for the rest of his life, he said it was lutershtial(hope I spelled that right) fibrosis lung disease
he has had no issues taking prednisone before, he eats a lot more on it but he needs to eat more he is very thin, if he eats to much he cant breathe, with out prednisone he cant walk across the room, he loses his breath
the dr today also said to talk to his heart dr about taking metoprolol, he takes 50 mg a day and this dr says it is restricting his air passages, he used to be on 100 mg and they cut it back but it is still ristricting his breathing.
the dr said his lung disease is irreversable, the only thing that will save him is a lung transplant, but because of his other health issues he would not make it through the surgery, I hope this helps, God Bless "
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Reply #3 - 04/27/07  1:22am
" "Doug, I have a steroid reaction problem. I can't take Prednisone. I was skin tested and I'm taking a round of Dexamethason. This is the steroid that I had the least reaction to. If this doesn't work for me I'm as the saying goes, "Up a creek without a paddle." "
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Reply #4 - 06/12/07  2:38am
" I appreciate the fact that Prednisone helped my mother-in-law that had pulmonary fibrosis to breathe better, but at the age of 44 she had to have cataracts removed. It is very common with long-term use of Prednisone to develop cataracts in your eyes. She could barely see me when I was pregnant with her first grand-child, let alone the baby when he was born. So, it helped and hurt her in two different ways. "
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Reply #5 - 01/19/09  2:40pm
" I was disgosed with PF about a month ago. I was sent home with Prednizone to help me breathe and Albuterol to be used four times a day. Between the two drugs, I had a sore mouth, couldn't taste my food, felt very hyper and couldn't sleep at night. I am on oxygen 24 ours a day. I decided not to continue taking Prednizone or Albuterol. I feel so much better and the quality of my life has improved. If you are able to breathe without the use of Prednizone, I would encourage you to consider not taking the drug. "
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Reply #6 - 01/19/09  10:17pm
" I have been on predisone since 2007,and I do have alot of problems.I don't sleep well,irratable and get depressed at times.I am seeing My Doctoe in March after a CT scan,I need off of this medicine.Also bone loss due to predisone. "
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Reply #7 - 01/21/09  12:41am
" I took Prednisone thru last summer. I gained 20 lbs. got irritable and was hungry all the time. I had trouble sleeping. I also had joint aches more than usual. I was on 60mg a day for 3 months then 30mgs for 15 day then 7.5mgs for 15 days then 3.5mg for 15 days then I was off it. It didn't improve my breathing at all. "
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Reply #8 - 01/21/09  9:50pm
" Doug, prednisone has saved my life more than once, but the side effects are awful. I was on 120mg daily and it made me feel like I was losing my mind. My brain was speeding until I couldn't think straight. After three days, they finally started to wean down. I am now completely off and I hope I never have to take such hihg doses again. It is a miracle drug in one way and a horific drug in another way. "
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Reply #9 - 02/02/09  10:59am
" Hi Doug, according to my Dr.at UPMC one of the few hospitals that specialize in IPF tx and research, prendisone is useless and has many deliterious side effects. Oxygen helps, and I was told the only tx that works is a lung transplant when the situation can no longer be managed. He did stress Pulmonary Rehab - they teach you skills to manage your infirmity. You can contact Simmons Ctr. for ILD(interstitial lung disease) in Pittsburgh. I have participated in clinical trials for new drug therapies, but unfortunately without improvement. Dr Kevin Gibson is said to be the go to guy and I am happy that he is my doc. "
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Reply #10 - 09/01/09  11:10pm
" I have been on 60 MG of Prednisone for 15 days. I feel like the "Incredible Hulk" trying to break through the mask of civility! My poor husband....then I crash and can hardly move.

U of Chgo said I need to be on this dose until Jan. and they may add other immunosuppressants...Oh, and did I tell you I also just was diagnosed with probably Common Variable Immune Deficienty (which is not common at all). So I already have a compromised immune system and not they are further depleting it...and the thing that helped me ward off chronic respiratory infections was Traditional Chinese Medicine, which they do not want me to take....

Has anyone survived being on 60 Mg. for 4 or 5 months?

I am going to National Jewish Hospital in Denver in October for a week's review. Has anyone been there? (My cardiologist told me today it's dangerous to go to that high elevation--especially after a lung biopsy last month.)

Am praying for all of you--to me that's been the best medicine--to pray for others and try not to focus so much on what's happening in my own life...and to focus on the blessings I have and the things I can still do....Thank you all for posting so much helpful info! Kauailover "

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