Re: Re: Don's mental state

[Guest guest]

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

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> > __________________________________________________> >

[Guest guest]

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 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> > __________________________________________________> >

[Guest guest]

Hummmm! KBruce Moreland wrote: Prozac also covers a rather narrow range of mood issues and doesn't workfor many. He could have been on it too long. His dosage could be toosmall. 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 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> > >

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