Re: Bev.

[Guest guest]

Hi Bev,

I don't want to scare you but I had a horrible experance with prednisone. It did help for a little while then gaining 70 lbs. in 8 weeks it went down from there. I had a hard time eating and breathing from the weight. couldn't sleep. bones and joints ached so badly I could hardly walk. chills, then hot flashes. My skin was so thin I could bump into a wall and peal back skin. lost a lot of hair.

I really went through almost two years of misery and am still fighting to loose the weight to be listed for transplant. ( haven't made up my mind about that one still, I need to soon.) I aged 10 years very quickly.

All that to learn that prednisone does NOT do anything for ipf. I would never take it again. I was on 60 mg for 8 weeks the weaned down 5 mg every two weeks. that was when the most of the pain started. So I would be very careful when your husband comes off it. go slowly.

I would also have a long talk with his dr about why he is on it.

The thing that keeps me strong is my faith. I know all this is in God's plan for my life.

I have added y'all to my prayer list. I am so grieved at times this list is getting so long for this group. It breaks my heart for the group and our familys that are fighting this monster. So God Bless you and give you strength.

Love and Prayers, Peggy 9/04 ipf Florida

I've been reading about prednisone making several of you so

miserable.What were the terrible side effects you had?Would like to

hear any & all responses.My husband,Bobby,is alt.dosage of 40mg &

20mg.He was put on this to help his breathing.So what were y'all put

on it for?He is on 5 liters 02 at rest & 6 when moving around,with

supplemental by mask when needed which is becoming more

frequent.Please let me hear any & all comments.

Bev from so.ill

husband Bobby pf/11/04