BRUCE, i just sent you message, it disappeared

[Guest guest]

I have been on 15mg of pred for several months, and some people have

sais that decreasing it just a couple of mgs. at a time can cause

different reactions with your breathing, is that right?

I talked with this morning (pulmo's nurse) and am having him call

me I am not satified with his explanation of not being able to put oxy.

where I can breathe best.

Peggy says: " I'm livin' it " . I like that.

I have it at 5 now cause I am typing and not exerting myself. If I get

up and walk down the hall, it drops significantly. That is sad.

Love, mlp

[Guest guest]

Lou

Do you have an oximeter? You don't adjust oxygen just based on feel.

What is it dropping to if you walk down the hall?

Yes, the drop from 15 to 12.5 could do that. After several months would

that be a fairly easy drop for most? Probably. But not for all. You

could be getting close to your ultimate maintenance dosage. Definitely

if some of these things came right after the drop they could be related.

>

> I have been on 15mg of pred for several months, and some people have

> sais that decreasing it just a couple of mgs. at a time can cause

> different reactions with your breathing, is that right?

>

> I talked with this morning (pulmo's nurse) and am having him

call

> me I am not satified with his explanation of not being able to put

oxy.

> where I can breathe best.

>

> Peggy says: " I'm livin' it " . I like that.

>

> I have it at 5 now cause I am typing and not exerting myself. If I get

> up and walk down the hall, it drops significantly. That is sad.

>

> Love, mlp

>

[Guest guest]

Bruce, what is " ultimate maintenance dosage " ????

> >

> > I have been on 15mg of pred for several months, and some people

have

> > sais that decreasing it just a couple of mgs. at a time can cause

> > different reactions with your breathing, is that right?

> >

> > I talked with this morning (pulmo's nurse) and am having him

> call

> > me I am not satified with his explanation of not being able to put

> oxy.

> > where I can breathe best.

> >

> > Peggy says: " I'm livin' it " . I like that.

> >

> > I have it at 5 now cause I am typing and not exerting myself. If

I get

> > up and walk down the hall, it drops significantly. That is sad.

> >

> > Love, mlp

> >

>

[Guest guest]

ML, When you get up to walk down the hall and your saturation begins to drop turn it up. You have to protect your body. When you talk to our Doc. ask him #1 WHY would you be told NOT to turn up your 02 with dropping saturation.? Be sure YOU are satisfied with his answer. #2 ask him at what level he feels you are safe.. ie:90, 91 etc. I honestly think you are about to need a new Doc. This doesn't make any since unless he thinks you can;t read an oximeter.. Take care of YOU sweet lady. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 

[Guest guest]

Lou

Some people come off of prednisone entirely. Some don't and find that 10

mg or 10 mg every other day or something similar is what they need to

stay on. They feel better there than coming off. Do you know what he had

planned for you? Even when coming off the decreases at the lower levels

are more difficult than at the upper levels. No one can predict how an

individual will react.

> > >

> > > I have been on 15mg of pred for several months, and some people

> have

> > > sais that decreasing it just a couple of mgs. at a time can cause

> > > different reactions with your breathing, is that right?

> > >

> > > I talked with this morning (pulmo's nurse) and am having him

> > call

> > > me I am not satified with his explanation of not being able to put

> > oxy.

> > > where I can breathe best.

> > >

> > > Peggy says: " I'm livin' it " . I like that.

> > >

> > > I have it at 5 now cause I am typing and not exerting myself. If

> I get

> > > up and walk down the hall, it drops significantly. That is sad.

> > >

> > > Love, mlp

> > >

> >

>

[Guest guest]

Hi Bruce: I have an oximeter around my neck, and that is how I

continue to know what I need to feel right. I bought it about 6

months ago or so. I rely on it a lot, and it tells me what I need

pretty much.

> > > >

> > > > I have been on 15mg of pred for several months, and some

people

> > have

> > > > sais that decreasing it just a couple of mgs. at a time can

cause

> > > > different reactions with your breathing, is that right?

> > > >

> > > > I talked with this morning (pulmo's nurse) and am

having him

> > > call

> > > > me I am not satified with his explanation of not being able

to put

> > > oxy.

> > > > where I can breathe best.

> > > >

> > > > Peggy says: " I'm livin' it " . I like that.

> > > >

> > > > I have it at 5 now cause I am typing and not exerting myself.

If

> > I get

> > > > up and walk down the hall, it drops significantly. That is

sad.

> > > >

> > > > Love, mlp

> > > >

> > >

> >

>

[Guest guest]

Lou

Great. Make some notes on readings and situations and then when you

discuss those with the doctor, he'll understand. If he doesn't, then he

has a problem. As to the nurse, I don't know here knowledge of the

different lung diseases.

> > > > >

> > > > > I have been on 15mg of pred for several months, and some

> people

> > > have

> > > > > sais that decreasing it just a couple of mgs. at a time can

> cause

> > > > > different reactions with your breathing, is that right?

> > > > >

> > > > > I talked with this morning (pulmo's nurse) and am

> having him

> > > > call

> > > > > me I am not satified with his explanation of not being able

> to put

> > > > oxy.

> > > > > where I can breathe best.

> > > > >

> > > > > Peggy says: " I'm livin' it " . I like that.

> > > > >

> > > > > I have it at 5 now cause I am typing and not exerting myself.

> If

> > > I get

> > > > > up and walk down the hall, it drops significantly. That is

> sad.

> > > > >

> > > > > Love, mlp

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Lou

when the o2 sat drops, you probably need to raise the lpm

talk to your pulmonaryPink Joyce IPF 3/06 Pennsylvania

Subject: BRUCE, i just sent you message, it disappearedTo: Breathe-Support Date: Monday, November 3, 2008, 11:05 AM

I have been on 15mg of pred for several months, and some people have sais that decreasing it just a couple of mgs. at a time can cause different reactions with your breathing, is that right?I talked with this morning (pulmo's nurse) and am having him call me I am not satified with his explanation of not being able to put oxy. where I can breathe best.Peggy says: "I'm livin' it". I like that.I have it at 5 now cause I am typing and not exerting myself. If I get up and walk down the hall, it drops significantly. That is sad.Love, mlp