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Hi. I'm Don recently diagnosed with IPF by biopisy. Waiting on approval from Ins. to go to Chicago specialist. Symptoms are some shortness of breath when exerting, throat tickle which occasionally causes a cough, and sat's 94 so quite a shock when Dr. told me 2.5 year average survival rate. What is 6 min. walk you all talk about? Don IPF 08-09. Re: decrease prednisone -- lower SAT's

PinkIt seems that each person has a maintenance level of prednisone thatworks for them. For some it's 10 mg, some can get to zero, and othersall the way in between. As a non-prednisone user I still see what Ithink is sometimes a misstated objective for those who have been helpedby prednisone. Instead of the goal being to get off of prednisone,shouldn't it really be to get to the lowest level appropriate for thatpatient. Your change may just be temporary but certainly is something tobe carefully watched and until you return to previous sats at 9,certainly wouldn't seem to warrant going to 8. Would seem to warrantreturning to 10 if you don't get to previous sats.Now, do want to ask one question. I know you just got a new oximeter? Besure its not a difference in oximeters. I'm sure knowing you, thatyou've checked with both already to be sure.>> Remember telling you about this phenomenal 6 min walk that i did acouple of weeks ago?>> well, pulmonary started decreasing prednisone by 1 mg, one month at atime>> so far i went from 10 mgs to 9 mgs. [goal is down to 7 mgs]>> well i have already noticed a change in my SAT's>> when not using O2, my SAT's would hover in the mid 90's while walkingaround the house and doing easy stuff>> i could even go up and down the steps without a significant drop inSAT's>> now, since i have been down to 9 mgs for about 2 weeks, my SAT's arehovering in the low 90's and sometimes into the high 80's>> hence, i need to use the o2 more often while in the house>> just went up the steps twice to document -- (need to keep some type ofrecord)> first trip up , SAT was 98> second trip up, SAT was 93>> a few months ago, when o2 company sent an recording oximeter tojustify need for o2, walking around the house without o2, the SATwouldn't drop, so i had to go up and down the steps multiple times toget it to drop -- the heart rate went up faster than the SAT dropped>> it's amazing that a drop in 1 mg of prednisone could make such adifference>> yes, i already emailed the pulmonary office, but that was prior to mygoing up the steps experiment for record keeping>> thanks for listening>>> Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania> Donate Life Listed 1/09 Inactive 4/09> www.transplantfund.org>

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Don

Six minute walk is basically walking six minutes with an oximeter on

your finger and seeing how your sats drop. I suspect from what you say

you haven't had your saturation checked under exertion. Many of us can

sit at 94% or higher but drop rapidly when we exert ourselves in any

way. On a six minute walk with no oxygen I drop to 81% in fewer than 30

seconds.

> >

> > Remember telling you about this phenomenal 6 min walk that i did a

> couple of weeks ago?

> >

> > well, pulmonary started decreasing prednisone by 1 mg, one month at

a

> time

> >

> > so far i went from 10 mgs to 9 mgs. [goal is down to 7 mgs]

> >

> > well i have already noticed a change in my SAT's

> >

> > when not using O2, my SAT's would hover in the mid 90's while

walking

> around the house and doing easy stuff

> >

> > i could even go up and down the steps without a significant drop in

> SAT's

> >

> > now, since i have been down to 9 mgs for about 2 weeks, my SAT's are

> hovering in the low 90's and sometimes into the high 80's

> >

> > hence, i need to use the o2 more often while in the house

> >

> > just went up the steps twice to document -- (need to keep some type

of

> record)

> > first trip up , SAT was 98

> > second trip up, SAT was 93

> >

> > a few months ago, when o2 company sent an recording oximeter to

> justify need for o2, walking around the house without o2, the SAT

> wouldn't drop, so i had to go up and down the steps multiple times to

> get it to drop -- the heart rate went up faster than the SAT dropped

> >

> > it's amazing that a drop in 1 mg of prednisone could make such a

> difference

> >

> > yes, i already emailed the pulmonary office, but that was prior to

my

> going up the steps experiment for record keeping

> >

> > thanks for listening

> >

> >

> > Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

> > Donate Life Listed 1/09 Inactive 4/09

> > www.transplantfund.org

> >

>

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bruce

you are correct -- i am using both oximeters at home or just the original one at home and the new one outside -- i use more supplemental o2 outside of the house, so am not as concerned

the test with the steps is done with the original oximeter

i do think the new one might be 1 or 2 points lower at times

but when i use both of them at the same time, they are the same or very close

i'm also wondering if the weather has anything to do with it -- colder hands?

could it be the seasonal allergies?

pulmonary's goal is to get me down to 7 mgs, but i know that lots of people need a higher dose to maintain

i was doing well on 10 mgs, if my body doesn't adjust to the decrease, i'll just go back up to 10 mgs

my personal goal has never been to get off prednisone -- it's to maintain at the lowest dose possible

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: decrease prednisone -- lower SAT'sTo: Breathe-Support Date: Friday, October 2, 2009, 9:21 AM

PinkIt seems that each person has a maintenance level of prednisone thatworks for them. For some it's 10 mg, some can get to zero, and othersall the way in between. As a non-prednisone user I still see what Ithink is sometimes a misstated objective for those who have been helpedby prednisone. Instead of the goal being to get off of prednisone,shouldn't it really be to get to the lowest level appropriate for thatpatient. Your change may just be temporary but certainly is something tobe carefully watched and until you return to previous sats at 9,certainly wouldn't seem to warrant going to 8. Would seem to warrantreturning to 10 if you don't get to previous sats.Now, do want to ask one question. I know you just got a new oximeter? Besure its not a difference in oximeters. I'm sure knowing you, thatyou've checked with both already to be sure.>> Remember telling you about this phenomenal 6 min walk that i did acouple of weeks ago?>> well, pulmonary started decreasing prednisone by 1 mg, one month at atime>> so far i went from 10 mgs to 9 mgs. [goal is down to 7 mgs]>> well i have already noticed a change in my SAT's>> when not using O2, my SAT's would hover in the mid 90's while walkingaround the house and doing easy stuff>> i could even go up and down the steps without a significant drop inSAT's>> now, since i have been down to 9 mgs for about 2 weeks, my SAT's arehovering in the low 90's and sometimes into the high

80's>> hence, i need to use the o2 more often while in the house>> just went up the steps twice to document -- (need to keep some type ofrecord)> first trip up , SAT was 98> second trip up, SAT was 93>> a few months ago, when o2 company sent an recording oximeter tojustify need for o2, walking around the house without o2, the SATwouldn't drop, so i had to go up and down the steps multiple times toget it to drop -- the heart rate went up faster than the SAT dropped>> it's amazing that a drop in 1 mg of prednisone could make such adifference>> yes, i already emailed the pulmonary office, but that was prior to mygoing up the steps experiment for record keeping>> thanks for listening>>> Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania> Donate Life Listed 1/09 Inactive 4/09> www.transplantfund.

org>

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Hi don -- as Peggy would say "there is no expiration date stamped on your behind"

welcome, sorry you need us, but glad you are here

6 min walk at Penn -- walk up and down a corrider for 6 minutes with an oximeter attached to you (the one Penn uses now is wrapped around my forehead)

while you walk, they monitor the O2 levels, and at each minute, they ask where you are on the shortness of breath scale

blood pressure is taken prior to walk and several times after walk

they measure the distance you walk and the speed

i still do mine without supplemental oxygen, but it's nearby in case i need it

it's done the same day as the pulmonary function test

then I compare the current walk with the previous ones to see if i am stable or if there is a change

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: decrease prednisone -- lower SAT'sTo: Breathe-Support Date: Friday, October 2, 2009, 12:17 PM

Hi. I'm Don recently diagnosed with IPF by biopisy. Waiting on approval from Ins. to go to Chicago specialist. Symptoms are some shortness of breath when exerting, throat tickle which occasionally causes a cough, and sat's 94 so quite a shock when Dr. told me 2.5 year average survival rate. What is 6 min. walk you all talk about? Don IPF 08-09. Re: decrease prednisone -- lower SAT's

PinkIt seems that each person has a maintenance level of prednisone thatworks for them. For some it's 10 mg, some can get to zero, and othersall the way in between. As a non-prednisone user I still see what Ithink is sometimes a misstated objective for those who have been helpedby prednisone. Instead of the goal being to get off of prednisone,shouldn't it really be to get to the lowest level appropriate for thatpatient. Your change may just be temporary but certainly is something tobe carefully watched and until you return to previous sats at 9,certainly wouldn't seem to warrant going to 8. Would seem to warrantreturning to 10 if you don't get to previous sats.Now, do want to ask one question. I know you just got a new oximeter? Besure its not a difference in oximeters. I'm sure knowing you, thatyou've checked with both already to be sure.>> Remember telling you about this phenomenal 6 min walk that i did acouple of weeks ago?>> well, pulmonary started decreasing prednisone by 1 mg, one month at atime>> so far i went from 10 mgs to 9 mgs. [goal is down to 7 mgs]>> well i have already noticed a change in my SAT's>> when not using O2, my SAT's would hover in the mid 90's while walkingaround the house and doing easy stuff>> i could even go up and down the steps without a significant drop inSAT's>> now, since i have been down to 9 mgs for about 2 weeks, my SAT's arehovering in the low 90's and sometimes into the high

80's>> hence, i need to use the o2 more often while in the house>> just went up the steps twice to document -- (need to keep some type ofrecord)> first trip up , SAT was 98> second trip up, SAT was 93>> a few months ago, when o2 company sent an recording oximeter tojustify need for o2, walking around the house without o2, the SATwouldn't drop, so i had to go up and down the steps multiple times toget it to drop -- the heart rate went up faster than the SAT dropped>> it's amazing that a drop in 1 mg of prednisone could make such adifference>> yes, i already emailed the pulmonary office, but that was prior to mygoing up the steps experiment for record keeping>> thanks for listening>>> Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania> Donate Life Listed 1/09 Inactive 4/09> www.transplantfund.

org>

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wow Bruce -- that's a huge drop

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: decrease prednisone -- lower SAT'sTo: Breathe-Support Date: Friday, October 2, 2009, 1:12 PM

DonSix minute walk is basically walking six minutes with an oximeter onyour finger and seeing how your sats drop. I suspect from what you sayyou haven't had your saturation checked under exertion. Many of us cansit at 94% or higher but drop rapidly when we exert ourselves in anyway. On a six minute walk with no oxygen I drop to 81% in fewer than 30seconds.> >> > Remember telling you about this phenomenal 6 min walk that

i did a> couple of weeks ago?> >> > well, pulmonary started decreasing prednisone by 1 mg, one month ata> time> >> > so far i went from 10 mgs to 9 mgs. [goal is down to 7 mgs]> >> > well i have already noticed a change in my SAT's> >> > when not using O2, my SAT's would hover in the mid 90's whilewalking> around the house and doing easy stuff> >> > i could even go up and down the steps without a significant drop in> SAT's> >> > now, since i have been down to 9 mgs for about 2 weeks, my SAT's are> hovering in the low 90's and sometimes into the high 80's> >> > hence, i need to use the o2 more often while in the house> >> > just went up the steps twice to document -- (need to keep some typeof> record)> > first trip up , SAT was

98> > second trip up, SAT was 93> >> > a few months ago, when o2 company sent an recording oximeter to> justify need for o2, walking around the house without o2, the SAT> wouldn't drop, so i had to go up and down the steps multiple times to> get it to drop -- the heart rate went up faster than the SAT dropped> >> > it's amazing that a drop in 1 mg of prednisone could make such a> difference> >> > yes, i already emailed the pulmonary office, but that was prior tomy> going up the steps experiment for record keeping> >> > thanks for listening> >> >> > Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania> > Donate Life Listed 1/09 Inactive 4/09> > www.transplantfund. org> >>

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Pink

Yes, needless to say that quickly ends any walking without oxygen. Mine

is so funny because I can sit here as I am right now and I'm at 97% with

no oxygen. But I drop very fast and depending on the activity need 3 to

5 lpm. Some days I can walk slowly around the house not bending or

lifting and be fine on 2 lpm. It's just evidence of how essential an

oximeter is to those of us with PF. It's like you monitoring what is

going on right now. It means you don't have a purely subjective view

that they might question. You've got a measurement. If you didn't and

just said I don't feel as well on the lower dosage they would attribute

it to loss of the steroid euphoria.

> > >

> > > Remember telling you about this phenomenal 6 min walk that i did a

> > couple of weeks ago?

> > >

> > > well, pulmonary started decreasing prednisone by 1 mg, one month

at

> a

> > time

> > >

> > > so far i went from 10 mgs to 9 mgs. [goal is down to 7 mgs]

> > >

> > > well i have already noticed a change in my SAT's

> > >

> > > when not using O2, my SAT's would hover in the mid 90's while

> walking

> > around the house and doing easy stuff

> > >

> > > i could even go up and down the steps without a significant drop

in

> > SAT's

> > >

> > > now, since i have been down to 9 mgs for about 2 weeks, my SAT's

are

> > hovering in the low 90's and sometimes into the high 80's

> > >

> > > hence, i need to use the o2 more often while in the house

> > >

> > > just went up the steps twice to document -- (need to keep some

type

> of

> > record)

> > > first trip up , SAT was 98

> > > second trip up, SAT was 93

> > >

> > > a few months ago, when o2 company sent an recording oximeter to

> > justify need for o2, walking around the house without o2, the SAT

> > wouldn't drop, so i had to go up and down the steps multiple times

to

> > get it to drop -- the heart rate went up faster than the SAT dropped

> > >

> > > it's amazing that a drop in 1 mg of prednisone could make such a

> > difference

> > >

> > > yes, i already emailed the pulmonary office, but that was prior to

> my

> > going up the steps experiment for record keeping

> > >

> > > thanks for listening

> > >

> > >

> > > Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

> > > Donate Life Listed 1/09 Inactive 4/09

> > > www.transplantfund. org

> > >

> >

>

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