Re: gina

[Guest guest]

Wow! Are you a doctor? Even our doc didn't explain it like that. That was very good. It has been a very bad 6 days. We thought that the entrance of the high pressure into the midwest would make him feel better. He is not. He has decided that when we go to Springfield to see the ENT doc he wants to go see the pulmonlogist and tell him to take him off the prednisone. I'm not sure how I feel about that. He said he wants to just die. That was tough to take. k Illinois wrote: Dear K, From all the reading I've done I'd say that's pretty much it for the time being ......treatments that are known to be effective ACROSS the RANGE of PF conditions just do NOT exist. However & it IS a big HOWEVER..... SOME patients DO respond to certain therapies such as Prednisone./ Imuran etc..some for a short period, some seem to respond all the time. FOR EXAMPLE it's known that CELLULAR NSIP is a 'GOOD' responder...Mixed NSIP & Fibrotic NSIP are less certain, but there has been success for people with this form as well. Z & Beth are 2 people on this Forum who've had good response to Prednisone in terms of it stabilizing their PF. People with UNDERLYING conditions such as Connective Tissue Disorders or Auto-Immune Disease aslo take Prednisone to control those disease processes. In those cases it is obviously beneficial to control the underlying casue of the diease process that lead to PF in the first place. Although, in my mind, it DOES beg the question : WHY do Patients who've been taking Prednisone for years to control those diseases go on to develop PF at all if Prednisone is so darn good a drug for PF ???????? UIP is the one where the success is known to be poor unless there is a lot of inflamation & the Prednisone can at least reduce that aspect of the disease...it DOES NOT & CAN NOT reduce the scarring (Fibrosis). Doctors often prescribe it anyway for a variety of reasons (including merely wanting to something, ANYTHING to give their patients hope!) Even if Don had a form that can respond in some way to Steroid/Autoimmune Treatments the downside can be that the side effects become too severe to continue. No one knows until they start the course of treatments. Some side effects can take a long time to show up. Some side effects stop (eg Diabetes, shakiness, weight gain) when the treatment stops..others become permanent! (eg Cataract, glaucoma, osteoporosis damage) The 2 Drugs that do seem to be of universal benefit are O2 & NAC ( N- Acetyl Cysteine...given to relieve mucous production but now also thought to be operating at a cellular level to slow progression within lung tissue structures) There is now

a Trial to go ahead to test the egffectives of NAC. O2 use helps prevent damage to other major organs in the body & therefore helps to prolong life. as well as to ENJOY it more. I think it is critical that new patients are taught to understand just why O2 is so important. Doctors need to recognise that the 6 min walk is NOT a satisfactory indicator of O2 needs when taking exercise. I don't think it is good enough that Doctors wait to prescribe O2 until a patient is OBVIOUSLY displaying signs of Oxygn deprivation (blue lips, clubbing of the fingers, cold extremities, & dropping SATs in the 6 min Walk Test etc etc ) Now that many of us

are being diagnosed in earlier stages of the Disease Process it is CRITICAL that we monitor ourselves for signs of dropping SATS when we ARE being active...not just sitting in a Doctor's Office, after an hour's waiting time (Sitting of course!) I don't WANT to just WALK thank you...I want to be out there LIVING.... Having a Lung Biopsy would hopefully indicate which TYPE of PF that Don has, but a word of warning...it needs to be done by one of the Facilities that specialise in PF....they need to take samples from 3 sites to cross examine what's going on in the lung. Other wise the Biopsy can be a waste of effort, especially given that it IS an invasive procedure with varying recovery times. If Don was wanting to join any of the Clinical Trials he would have to have a Biopsy to be eligible. WE've all had different experiences....try outting VATS in the Search facility on the Web Message Board you'll get lots of discussion that has gone on previously on this subject...as well as Prednisone...there's OODLES on that subject! in Oz IPF: Fibrotic NSIP/ UIP??????? Reynauds' May 2007 > > > > >> > > > > Sher,> > > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > > is definitely preferable to IPF, the life expectancy is much longer> > > > and as a bonus, it does not always progress. As a matter of fact,> > > > Dr. on at Duke just told me last month that he's seen > > patients> > > > with NSIP who have been "stable for decades." I mean I know that my> > > > experience may be different but anything that gives us hope is>

> > > helpful!> > > > > Have they switched your dx based on the behavior of the > > disease or> > > > also on the ct scan results? NSIP is usually very identifiable > > by CT> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > > you> > > > would need a biopsy. But at this point it probably doesn't > > matter as> > > > long as your stable. I understand why you wouldn't put yourself> > > > through that. I don't regret my biopsy but I totally get why you've> > > > chosen not to go down that road.> > > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > >

>> > > >> > >> > > > > > > > > > Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > RHEUMATOID ARTHRITIS 03/08> > Mississippi> > __________________________________________________> >

[Guest guest]

/

For someone who can be so Scilly she can just reach back and have

periods of sheer brilliance. Oh, I have to refer to her as Doctor Scilly

from now on. DS from BWBB.

It's got to be difficult to hear him talk about wanting off the

prednisone and wanting to die. Now, the problem is figuring out whether

its a depressive current state saying that or his real thoughts. I know

many won't do it, but psychiatric help and counseling really are called

for in such situations. There are medications that can offset some of

the effects of prednisone on moods. Thats where the psychiatrist comes

in. As to the counseling, its a way of one finding out their true

feelings versus the moment. I had a long period before PF when I wanted

to die. But, today I'm living every way I can. Just let me assure you

that what he's feeling deep inside right now in his state may be scarier

to him than death is.

He has to decide on the prednisone but needs to be in the right state of

mind when he does. However, he needs you to support whatever he decides

and not just in words, but spirit. Would you want him to hold on to

something that is feeling worse than death just because he thought you

felt he must? Maybe the doctor can provide him medication to help offset

it if he chooses. If not, maybe off of prednisone he'll decide he wants

to live, not die. Do understand tailing off can be worse than getting on

or being on so be prepared.

I can't imagine being the spouse or the caretaker. I have no idea how I

would react. I don't think he is close to death from what I've read or

really wants to die but he just doesn't want to hurt physically and

emotionally like he does today any longer. The worst physical pain I've

ever felt was when the anesthesia wore off too quickly after my VATS and

I experienced things I never should have. However, even that pain didn't

match the emotional pain I previously felt.

One last thing. One way to make him feel a little more alive is to make

a concentrated effort to spend some time treating him like a husband,

father, friend....if your leg hurts, ask him to massage it. Make him

feel like he still serves a purpose. Share things that took place during

the day but have nothing to do with the disease. Watch a favorite movie.

Do anything that at least briefly makes him feel like more than a

patient. He has in some ways become his disease and all that includes.

You know he's still much more, but does he?

> > > > > >

> > > > > > Sher,

> > > > > > I'm happy to hear the doctors have switched your diagnosis.

NSIP

> > > > > is definitely preferable to IPF, the life expectancy is much

longer

> > > > > and as a bonus, it does not always progress. As a matter of

fact,

> > > > > Dr. on at Duke just told me last month that he's seen

> > > patients

> > > > > with NSIP who have been " stable for decades. " I mean I know

that my

> > > > > experience may be different but anything that gives us hope is

> > > > > helpful!

> > > > > > Have they switched your dx based on the behavior of the

> > > disease or

> > > > > also on the ct scan results? NSIP is usually very identifiable

> > > by CT

> > > > > scan. To identify the type of NSIP (fibrotic, cellular or

mixed)

> > > you

> > > > > would need a biopsy. But at this point it probably doesn't

> > > matter as

> > > > > long as your stable. I understand why you wouldn't put

yourself

> > > > > through that. I don't regret my biopsy but I totally get why

you've

> > > > > chosen not to go down that road.

> > > > > > In the meantime, celebrate stability!! Stable is my happy

word!!

> > > > > > Beth

> > > > > > Age 48 Fibrotic NSIP 06/06

> > > > > >

> > > > > > Change everything. Love and Forgive

> > > > > >

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > > Caro

> > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

> > > RHEUMATOID ARTHRITIS 03/08

> > > Mississippi

> > > __________________________________________________

> > >

[Guest guest]

Tell me about "tailing off". I've never heard of it. K IllinoisBruce Moreland wrote: /For someone who can be so Scilly she can just reach back and haveperiods of sheer brilliance. Oh, I have to refer to her as Doctor Scillyfrom now on. DS from BWBB.It's got to be difficult to hear him talk about wanting off theprednisone and wanting to die. Now, the problem is figuring out whetherits a depressive current state

saying that or his real thoughts. I knowmany won't do it, but psychiatric help and counseling really are calledfor in such situations. There are medications that can offset some ofthe effects of prednisone on moods. Thats where the psychiatrist comesin. As to the counseling, its a way of one finding out their truefeelings versus the moment. I had a long period before PF when I wantedto die. But, today I'm living every way I can. Just let me assure youthat what he's feeling deep inside right now in his state may be scarierto him than death is.He has to decide on the prednisone but needs to be in the right state ofmind when he does. However, he needs you to support whatever he decidesand not just in words, but spirit. Would you want him to hold on tosomething that is feeling worse than death just because he thought youfelt he must? Maybe the doctor can provide him medication to help offsetit if he chooses. If not,

maybe off of prednisone he'll decide he wantsto live, not die. Do understand tailing off can be worse than getting onor being on so be prepared.I can't imagine being the spouse or the caretaker. I have no idea how Iwould react. I don't think he is close to death from what I've read orreally wants to die but he just doesn't want to hurt physically andemotionally like he does today any longer. The worst physical pain I'veever felt was when the anesthesia wore off too quickly after my VATS andI experienced things I never should have. However, even that pain didn'tmatch the emotional pain I previously felt.One last thing. One way to make him feel a little more alive is to makea concentrated effort to spend some time treating him like a husband,father, friend....if your leg hurts, ask him to massage it. Make himfeel like he still serves a purpose. Share things that took place duringthe day but have nothing to do

with the disease. Watch a favorite movie.Do anything that at least briefly makes him feel like more than apatient. He has in some ways become his disease and all that includes.You know he's still much more, but does he?> > > > > >> > > > > > Sher,> > > > > > I'm happy to hear the doctors have switched your diagnosis.NSIP> > > > >

is definitely preferable to IPF, the life expectancy is muchlonger> > > > > and as a bonus, it does not always progress. As a matter offact,> > > > > Dr. on at Duke just told me last month that he's seen> > > patients> > > > > with NSIP who have been "stable for decades." I mean I knowthat my> > > > > experience may be different but anything that gives us hope is> > > > > helpful!> > > > > > Have they switched your dx based on the behavior of the> > > disease or> > > > > also on the ct scan results? NSIP is usually very identifiable> > > by CT> > > > > scan. To identify the type of NSIP (fibrotic, cellular ormixed)> > > you> > > > > would need a biopsy. But at this point it probably doesn't> > > matter as>

> > > > long as your stable. I understand why you wouldn't putyourself> > > > > through that. I don't regret my biopsy but I totally get whyyou've> > > > > chosen not to go down that road.> > > > > > In the meantime, celebrate stability!! Stable is my happyword!!> > > > > > Beth> > > > > > Age 48 Fibrotic NSIP 06/06> > > > > >> > > > > > Change everything. Love and Forgive> > > > > >> > > > >> > > >> > >> > >> > >> > >> > > Caro> > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,> > > RHEUMATOID ARTHRITIS 03/08> > > Mississippi> > >

__________________________________________________> > >

[Guest guest]

,

I think by 'tailing off' Bruce is referring to the process of weaning off of the prednisone. It has to be very gradual to give his body a chance to adjust. Remember that prednisone is a hormone manufactured normally in all our bodies. While someone is on high doses, their body ceases producing it because it's being provided artificially. By weaning gradually you're giving his body a chance to begin making it again. It takes time. It took me 5 months to wean down from a high of 100mg a day to 0. Some will tell you that's fast but I tolerated it well. There have been folks here who've taken a year or more to wean off.

As Bruce said the side effects from weaning can be as severe or worse than just being on. However they are temporary. I had pretty horrendous muscle and joint pain while weaning but it gradually got better.

I know this must be so discouraging for him (and you too). Remember we're here to support and help not tell you what to do. This is all go ugly and difficult. Choices and decisions everywhere you look and no clear answers! Just remember we're here for you anytime you need us. Bruce and have given some brilliant information and explanation. Perhaps you want to print some of it out and share with Don? Or are you already doing that?

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Re: gina

Tell me about "tailing off". I've never heard of it.

K

IllinoisBruce Moreland <brucemoreland@ gmail.com> wrote:

/For someone who can be so Scilly she can just reach back and haveperiods of sheer brilliance. Oh, I have to refer to her as Doctor Scillyfrom now on. DS from BWBB.It's got to be difficult to hear him talk about wanting off theprednisone and wanting to die. Now, the problem is figuring out whetherits a depressive current state saying that or his real thoughts. I knowmany won't do it, but psychiatric help and counseling really are calledfor in such situations. There are medications that can offset some ofthe effects of prednisone on moods. Thats where the psychiatrist comesin. As to the counseling, its a way of one finding out their truefeelings versus the moment. I had a long period before PF when I wantedto die. But, today I'm living every way I can. Just let me assure youthat what he's feeling deep inside right now in his state may be scarierto him than death

is.He has to decide on the prednisone but needs to be in the right state ofmind when he does. However, he needs you to support whatever he decidesand not just in words, but spirit. Would you want him to hold on tosomething that is feeling worse than death just because he thought youfelt he must? Maybe the doctor can provide him medication to help offsetit if he chooses. If not, maybe off of prednisone he'll decide he wantsto live, not die. Do understand tailing off can be worse than getting onor being on so be prepared.I can't imagine being the spouse or the caretaker. I have no idea how Iwould react. I don't think he is close to death from what I've read orreally wants to die but he just doesn't want to hurt physically andemotionally like he does today any longer. The worst physical pain I'veever felt was when the anesthesia wore off too quickly after my VATS andI experienced things I

never should have. However, even that pain didn'tmatch the emotional pain I previously felt.One last thing. One way to make him feel a little more alive is to makea concentrated effort to spend some time treating him like a husband,father, friend....if your leg hurts, ask him to massage it. Make himfeel like he still serves a purpose. Share things that took place duringthe day but have nothing to do with the disease. Watch a favorite movie.Do anything that at least briefly makes him feel like more than apatient. He has in some ways become his disease and all that includes.You know he's still much more, but does he?> > > > > >> > > > > >

Sher,> > > > > > I'm happy to hear the doctors have switched your diagnosis.NSIP> > > > > is definitely preferable to IPF, the life expectancy is muchlonger> > > > > and as a bonus, it does not always progress. As a matter offact,> > > > > Dr. on at Duke just told me last month that he's seen> > > patients> > > > > with NSIP who have been "stable for decades." I mean I knowthat my> > > > > experience may be different but anything that gives us hope is> > > > > helpful!> > > > > > Have they switched your dx based on the behavior of the> > > disease or> > > > > also on the ct scan results? NSIP is usually very identifiable> > > by CT> > > > > scan. To identify the type of NSIP (fibrotic, cellular

ormixed)> > > you> > > > > would need a biopsy. But at this point it probably doesn't> > > matter as> > > > > long as your stable. I understand why you wouldn't putyourself> > > > > through that. I don't regret my biopsy but I totally get whyyou've> > > > > chosen not to go down that road.> > > > > > In the meantime, celebrate stability!! Stable is my happyword!!> > > > > > Beth> > > > > > Age 48 Fibrotic NSIP 06/06> > > > > >> > > > > > Change everything. Love and Forgive> > > > > >> > > > >> > > >> > >> > >> > >> > >> > > Caro> > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP

01/08,> > > RHEUMATOID ARTHRITIS 03/08> > > Mississippi> > > ____________ _________ _________ _________ _________ __> > >

[Guest guest]

Dear K,

No I'm not a Doctor but I do a LOT of reading from reputable sources & I've been having a bit of practice trying to out all this stuff into words that friends & family can clearly understand.

Now, as Beth has said ,Don must ONLY GO OFF PREDNISONE UNDER STRICT MEDICAL SUPERVISION....it is extremely dangerous to just STOP taking it! The body has become used to the artificially high levels of steriods & has more than likely stopped producing its own. Coming OFF Prednisone produces its own set of side effecdts as well. This is HEAVY DUTY MEDICATION.

One of the Side effects of Prednisone can be Mood Swings & other psychological disorders. Perhaps Don needs to be assessed by a Psychiatrist to see how much the drug may be affecting his mental health.

We're all pulling for you both...stay close by us . we'll respond as often as neccessary.

hugs n encouragement

GIO

> > > > > >> > > > > > Sher,> > > > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > > > is definitely preferable to IPF, the life expectancy is much longer> > > > > and as a bonus, it does not always progress. As a matter of fact,> > > > > Dr. on at Duke just told me last month that he's seen > > > patients> > > > > with NSIP who have been "stable for decades." I mean I know that my> > > > > experience may be different but anything that gives us hope is> > > > > helpful!> > > > > > Have they switched your dx based on the behavior of the > > > disease or> > > > > also on the ct scan results? NSIP is usually very identifiable > > > by CT> > > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > > > you> > > > > would need a biopsy. But at this point it probably doesn't > > > matter as> > > > > long as your stable. I understand why you wouldn't put yourself> > > > > through that. I don't regret my biopsy but I totally get why you've> > > > > chosen not to go down that road.> > > > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > > > Beth> > > > > > Age 48 Fibrotic NSIP 06/06> > > > > >> > > > > > Change everything. Love and Forgive> > > > > >> > > > >> > > >> > > > > > > > > > > > > > > Caro> > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > > RHEUMATOID ARTHRITIS 03/08> > > Mississippi> > > __________________________________________________> > >