Re: Don's mental state

April 15, 2008

Prozac also covers a rather narrow range of mood issues and doesn't work

for many. He could have been on it too long. His dosage could be too

small. But some combination of meds and counseling can help.

As to wanting to spend

> > > > > >

> > > > > > 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

> > > __________________________________________________

> > >

April 15, 2008

How many doctors do you have? I have a pcp, 2 pumonary specialists, liver specialist, ENT, oncologist and a hepatologist. Starting Thursday I will add a shrink and am look forward because the anti-depression pills I get from my pcp don't seem to key into my mental issues. My pcp is a new doctor for me who found out how sick I was. My ENT was also instrumental in finding the lung problems. However as much as I appreciate her I have moved on to specialists who can better treat me. My old pcp was a great friend but missed everything I was suffering from. Adios. I currently take 20 different prescription drugs including 3 for GERD. All were prescribed by my pulmonologist. I should say recommended by my 2 pulmonologists. All of my prescriptions are written by my pcp and she has come to be info center for me. I'm losing track of what I was intending to say here. Maybe the twenty rx's have something to do with my fits of dementia. Ha Ha. Anyway I think the point I'm coming to is never let friendship with a doctor keep you going to him/her. And don't hesitate to move up the chain to the doctor who is best qualified for Don's disease. Even if you feel badly about leaving behind a friend. It is all about Don and his quality of life. I would be glad to call and talk to Don whenever. Or your self. Also there are more qualified people on this board to call. Good luck to you both and let us know what happens at the appointment.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Re: Don's mental stateDate: Tue, 15 Apr 2008 18:26:05 -0700 (PDT)

We need to try to keep the gurd down and she is the one who got the cough slowed. He is on 40 mg of prozac. Maybe he has been on this one drug too long. He won't take any larger dose because his blood pressure goes too far down. I do go in with him and he knows that Don is depressed. I had a hard time getting him out of bed on Monday. I don't know what else to do.

I will make the appointment tomorrow.

K

Illinois

STEPHEN R WILSON <svwilsonmsn> wrote:

I don't know why you are taking him to a ENT at his point. You need to get his depression under control. Go in with him to the Pulmologist and make sure the Pulmo knows he is on the verge of giving up. I think a church counselor or a different anti depression drug is needed asap. We all need to fight this disease with whatever tools are available.

Steve59 from WA IPF 2006

From: Kennelly <l_kennelly>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Re: ginaDate: Tue, 15 Apr 2008 17:42:35 -0700 (PDT)

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 <gina.francisbigpond> 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> > __________________________________________________> >

April 15, 2008

Thanks Steve, I just read this to Don. k IllinoisSTEPHEN R WILSON wrote: How many doctors do you have? I have a pcp, 2 pumonary specialists, liver specialist, ENT, oncologist and a hepatologist. Starting Thursday I will add a shrink and am look forward because the anti-depression pills I get from my pcp don't seem to key into my mental issues. My pcp is a new doctor for me who found out how sick I was. My ENT was also instrumental in finding the lung problems.

However as much as I appreciate her I have moved on to specialists who can better treat me. My old pcp was a great friend but missed everything I was suffering from. Adios. I currently take 20 different prescription drugs including 3 for GERD. All were prescribed by my pulmonologist. I should say recommended by my 2 pulmonologists. All of my prescriptions are written by my pcp and she has come to be info center for me. I'm losing track of what I was intending to say here. Maybe the twenty rx's have something to do with my fits of dementia. Ha Ha. Anyway I think the point I'm coming to is never let friendship with a doctor keep you going to him/her. And don't hesitate to move up the chain to the doctor who is best qualified for Don's disease. Even if you feel badly about leaving behind a friend. It is all about Don and his quality of life. I would be glad to call and talk to Don whenever. Or your self. Also there are more qualified people on this board to call.

Good luck to you both and let us know what happens at the appointment. Steve59 from WA IPF 2006 From: Kennelly <l_kennelly>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Re: Don's mental stateDate: Tue, 15 Apr 2008 18:26:05 -0700 (PDT) We need to try to keep the gurd down and she is the one who got the cough slowed. He is on 40 mg of prozac. Maybe he has been on this one drug too long. He won't take any larger dose because his blood pressure goes too far down. I do go in with him and he knows that Don is depressed. I

had a hard time getting him out of bed on Monday. I don't know what else to do. I will make the appointment tomorrow. K Illinois STEPHEN R WILSON <svwilsonmsn> wrote: I don't know why you are taking him to a ENT at his point. You need to get his depression under control. Go in with him to the Pulmologist and make sure the Pulmo knows he is on the verge of giving up. I think a church counselor or a different anti depression drug is needed asap. We all need to fight this disease with whatever tools are available. Steve59 from WA IPF 2006 From: Kennelly

<l_kennelly>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Re: ginaDate: Tue, 15 Apr 2008 17:42:35 -0700 (PDT) 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

<gina.francisbigpond> 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> > __________________________________________________> >

April 16, 2008

I have been reading your posts and would offer a couple points. I was initially put on predisone for a few months and then requested to be taken off due to personality changes. I have lost a lot of weigh (as I think you mentioned Don has) and was concerned about not being hungry or able to eat much. I am now on 10 mg predisone and it has stimulated my appetite to the point I get hungry and do eat at least once a day. Something to watch for as you come down off predisone. It took 4 - 5 months to come off and I was only on for about 3 months.

The second area is farming. Having been raised in central Illinois not far from you, I feel I can relate to the farmers. Does Don have any opportunity to discuss farming with hired hands, friends, man farming for you, son's or anyone? I live alone and on days when I am here alone I get depressed and have trouble getting going. I am trying to get my house ready to sell and have a painter working here currently. On days when he is coming I have a lot more energy, better attitude and more desire to get going. If Don had someone to "talk story" with it might help his depressed feelings.

If you would like to meet for coffee sometime just let me know. I am about an hour from Springfield and would be more than willing to meet you and Don. I went to Dr for problem 12/05 and got the good news 06/06 in a very rude, crude way. Been battling attitude ever since.

Fay

IPF 06/06 IL

To: Breathe-Support Sent: Tuesday, April 15, 2008 8:26:05 PMSubject: Re: Re: Don's mental state

We need to try to keep the gurd down and she is the one who got the cough slowed. He is on 40 mg of prozac. Maybe he has been on this one drug too long. He won't take any larger dose because his blood pressure goes too far down. I do go in with him and he knows that Don is depressed. I had a hard time getting him out of bed on Monday. I don't know what else to do.

I will make the appointment tomorrow.

K

Illinois

STEPHEN R WILSON <svwilsonmsn (DOT) com> wrote:

I don't know why you are taking him to a ENT at his point. You need to get his depression under control. Go in with him to the Pulmologist and make sure the Pulmo knows he is on the verge of giving up. I think a church counselor or a different anti depression drug is needed asap. We all need to fight this disease with whatever tools are available.

Steve59 from WA IPF 2006

From: Kennelly <l_kennellyyahoo (DOT) com>Reply-To: Breathe-Support@ yahoogroups. comTo: Breathe-Support@ yahoogroups. comSubject: Re: Re: ginaDate: Tue, 15 Apr 2008 17:42:35 -0700 (PDT)

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 <gina.francis@ bigpond.com> 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.