Stefani-prednisone

[Guest guest]

Stefani,

I was first diagnosed with pulmonary fibrosis during a hospitalization that began on Memorial Day, 2006. At the time I was extremely ill, sats in the 70's and in congestive heart failure. I was 46. The doctors did what was necessary at the time to save my life. I was on iv SoluMedrol during that hospitalizaton at a dose of 750mg per day.

Over the next several months at home I was on oral prednisone. Highest dose was 100mg per day. I had pretty much every side effect that people talk about. Everything from insomnia to reflux to type II diabetes, to thrush, to irritability and mood swings. I also fortunately had a doctor who proactively helped me manage the side effects and prevented them from becoming complications.

My situation was probably not typical. I was started on steroids in an emergency, life threatening position. I also had a form of interstitial lung disease (NSIP) that responded to the steroids. They stablized my illness which in turn allowed my heart to heal and begin to function normally again. I was gradually weaned off the prednisone and was off completely by the end of February 2007. Once my dose got below 20mg per day, pretty much all the side effects went away. My blood sugar normalized, I could sleep, I wasn't jittery etc. I've been off prednisone for over 2 years now. I don't want to have to take it again but if the situation arose where it was recommended based on how my lung disease responded the first time I would do it in a heartbeat.

Sometimes you're in a situation where your choices are limited and you do what you have to do to stay alive. Leanne always calls prednisone the worst and the best drug at the same time. That's how I feel about too. You are so very right, it is very helpful to know if you are prone to type II diabetes before you go on prednisone. Personally I think everyone whose on high doses of pred for more than a week or so should be testing their blood sugar regularly. I tested twice a day when I was on it and had to inject myself with insulin several times a week to control it. But as I said, once my dose dropped below 20mg a day it all just went away.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, April 18, 2009 2:14:48 PMSubject: Re: Sher

The guide word to prednisone.. . know your blood chemistry (threat of diabetes II), check interactions, and know that different doses on different can have very different results, some good and some bad not necessarily both. Good luckStefani>> Sher,> Some people report increased energy when on higher doses of prednisone. It can be a jittery, restless kind of energy and insomnia usually goes along with it. I never found it to be a productive kind of energy, it didn't allow me to accomplish anything extra. Even with that change that prednisone can make in some of us we're still limited by our diseased lungs. At least that's my experience. I know that others have been through different

scenarios related to prednisone.> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> > To: Breathe-Support@ yahoogroups. com> Sent: Saturday, April 18, 2009 12:22:50 PM> Subject: Re: Hi Sher> > > > > > BJ... I did miss the post...> I'm crossing my fingers for a good sale.> I guess it's not doable for your daughter to come to you and help you move. I'm sure you thought of that.> Gosh BJ you just can't do that move alone. I don't mean to be intrusive but can you hire help or can your kids hire help? Often high school boys are looking for work.

Or now, grown men need the work!> Please don't do that by yourself! It's just too much for women of our 'delicate persuasion'. ;o)> I can't tell from your post... are you using O2 when you away from home? If not that sure could be dragging you down.> With my limited knowledge of prednisone (Hey, MB...give us a hand here) I think it gives you energy. At least at some level. Maybe the dosage has something to do with it...> I think you know when you are "progressing" BJ... being 'tired' after being out may not be progression. ..> Talk to your dr about your meds/O2 and what fears your sister has for you.> You could call the Police Dept and inquire about the incident.... let's hope that gives you confidence!> Do take care now!> > MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > ----- Original

Message ----- > From: Beverley Joy > To: Breathe-Support@ yahoogroups. com > Sent: Friday, April 17, 2009 6:30 PM> Subject: Re: Hi Sher> > I guess that you missed my post about my house. I don't have it on the market yet because first my niece wanted it but she can't get a lone for at least six months and I can't wait that long. Now my son-in-law knows someone who wants investment property and a place to stay when they go to Silverwood theme park. My house should fit that. I haven't heard anything from my daughter yet. I will wait until next week. Then if she doesn't call me I will call her. I can't wait much longer to put it on the market. I can't do a garage sale. I just don't have the strength.> I will have to move everything. Then my daughter said that she will have a sale for me. I don't have any help.> I am worried. I am just so very tired all of the time. My

sister thinks that they are killing me with the meds and oxygen. She can't seem to get it that I have to have the oxygen. Maybe the Prednisone is doing it. All the pulmo dude has put me on is prednisone and NAC. Do any of you know what can be making me so tired. I have an appointment with the pulmo doc in 2 weeks. I am afraid that I am progressing already. I went to my sister's to have her do my hair and then I went to the store to get meds and a few groceries. I came home tired and a little bit breathless. BJ>

To: Breathe-Support@ yahoogroups. com > Sent: Friday, April 17, 2009 8:39 AM> Subject: Re: Hi

Sher> > You didn't say, is your place on the market yet? You'll no doubt be having a garage sale first!> I hope you have someone to help you.> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Hi Sher> > Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old),> with us

for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa.> > My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. > > What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there

also, but I don't know when.> Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. > Hope you get better and back to posting!!!!! !!!!> G. UIP/ IPF 5/07> >