NSIP

[Guest guest]

Hello to all of you...Happy Chanukah too!!!I am ( the newbie)

Zion . I joined your group last week and just want to thank you all for

your posts. I have learned much in a little time. I would enjoy hearing

from you who also are dealing with NSIP in any form. My physician has

never mentioned the various forms and I have emailed him about the

subject. At least he is open to email correspondence. Usually he is

very forth coming with information. I'll see what he has to say on

Monday when he usually responds to my frequent week-end posts. Are you

oxygen dependent? Are you taking the hateful Prednisone? Have you had

success with pulmonary rehab? How to you get your energy back? I have

many more questions ,but I'll stop with these. Thanks in advance for

your attention and caring. Z./05

[Guest guest]

i was diagnosed march 2006 . I use o2 for exertion; 10 mgs prednisone

and Pulmonary rehab ( St 's in Langhorne) have made a positive

difference; getting my energy back comes from being active.

I didn't realize how much difference rehab made until I stopped going

for a few weeks. Could feel like i was decompensating. Went back to

rehab and feel better.

pink Joyce ipf 3/06

>

> Hello to all of you...Happy Chanukah too!!!I am ( the newbie)

> Zion . I joined your group last week and just want to thank you all

for

> your posts. I have learned much in a little time. I would enjoy

hearing

> from you who also are dealing with NSIP in any form. My physician has

> never mentioned the various forms and I have emailed him about the

> subject. At least he is open to email correspondence. Usually he is

> very forth coming with information. I'll see what he has to say on

> Monday when he usually responds to my frequent week-end posts. Are you

> oxygen dependent? Are you taking the hateful Prednisone? Have you had

> success with pulmonary rehab? How to you get your energy back? I have

> many more questions ,but I'll stop with these. Thanks in advance for

> your attention and caring. Z./05

>

[Guest guest]

Hi ,

I was diagnosed with Fibrotic NSIP this past summer. Initially, based on just a ct scan they told me IPF. Then after an open lung biopsy and a HRCT and consultation with doctors at Columbia Presbyterian in NY and Duke in NC the diagonsis was revised to Fibrotic NSIP. It's my understanding that NSIP is itself a fairly recent diagnosis category. I believe it's only been recognized as a separate entity since around 2003.

I've been on prednisone since June of this year. I was at one point taking 80mg a day. I'm now being weaned and as of last Thursday am down to 20mg. My experience on the pred has been good. I've had minimal side effects and firmly believe it helped to stablize my disease. That's not to say I've had no side effects but what I've had have been manageable for me.

I am definitely oxygen dependent. I have lost about 57% of my lung function. I use 3 lpm at rest and 5 on exertion. When I use the treadmill I have to use a venti mask and use 12 lpm in order to do what I'm capable of and keep my sats in the mid 90's.

I participated in an excellent pulmonary rehab program at a local rehab hospital. (Helen Hospital) I'll tell you honestly it was the best thing I could have done. It helped on many levels. I lost weight, gained energy, improved my cardiovascular health, learned about lung disease, got help with nutrition issues etc etc.... It was also great socially. I met other people with lung disease and made friends.

Hope this helped. Where are you located? If you have an opportunity to enroll in a pulmonary rehab program. If you do, go for it! It will help you get your energy back. I agree with Pink Joyce when she says more activity=more energy. It works for me as long as I'm careful. I've had to learn what my new limits are and not push past them. If I do I pay with exhaustion for several days. I have to accomodate my new reality and that is I'll never have my old energy back. I'll never be a "normal" 47 year old. But I'm still me and I'm still here. That's a very good thing!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

NSIP

Hello to all of you...Happy Chanukah too!!!I am ( the newbie) Zion . I joined your group last week and just want to thank you all for your posts. I have learned much in a little time. I would enjoy hearing from you who also are dealing with NSIP in any form. My physician has never mentioned the various forms and I have emailed him about the subject. At least he is open to email correspondence. Usually he is very forth coming with information. I'll see what he has to say on Monday when he usually responds to my frequent week-end posts. Are you oxygen dependent? Are you taking the hateful Prednisone? Have you had success with pulmonary rehab? How to you get your energy back? I have many more questions ,but I'll stop with these. Thanks in advance for your attention and caring. Z./05

[Guest guest]

prednisone is absolutely dreadful! i am soooooo glad i am being

weaned off of it.............if you didn't have a big butt before you

can look forward to one now! (now if only prednisone had given me

some boobs)!!!! LOL

EG 10-05

>

> Hello to all of you...Happy Chanukah too!!!I am ( the newbie)

> Zion . I joined your group last week and just want to thank you

all for

> your posts. I have learned much in a little time. I would enjoy

hearing

> from you who also are dealing with NSIP in any form. My physician

has

> never mentioned the various forms and I have emailed him about the

> subject. At least he is open to email correspondence. Usually he

is

> very forth coming with information. I'll see what he has to say on

> Monday when he usually responds to my frequent week-end posts. Are

you

> oxygen dependent? Are you taking the hateful Prednisone? Have you

had

> success with pulmonary rehab? How to you get your energy back? I

have

> many more questions ,but I'll stop with these. Thanks in advance

for

> your attention and caring. Z./05

>

[Guest guest]

>

> Hi all

>

> Is there anyone else here that has NSIP? (Non-Specific Interstitial

Pneumonia)

>

> Beth (Fibrotic NSIP 06/06)

>

> Draw close. Hold hands. Life is short. God is good.

>

Hi linda, I was diagnoised oct.2005 with NSIP I also have raynauds

and in march 2006 I was diagnoised with sclerederma but eveluating my

health and job still being done chemicals were the cause ofr my lungs

and I used a jackhammer for 11 years which can cause raynauds ..my

doc. are just waiting for me to start medication ......I was very

athletically active before 5 years ago. though running and swimming

has reduced drasticly ,joining rehab,and learning about my limits and

diet building my immune system using natural suppliments is working

for me. Ihave stayed stable since jan 2006. Ive found support,

information , comfort in this group that has grown since I joined laST

FALL finding out what works for you isn the key and I do believe in

lots of mirlces!! doris NSIP PF SCLERODERMA 2005

[Guest guest]

Yes, I do along with Lupus, RA, fibromayalgia. I'm glad to have found you and have someone to compare things with.

Re: NSIP

>> Hi all> > Is there anyone else here that has NSIP? (Non-Specific InterstitialPneumonia)> > Beth (Fibrotic NSIP 06/06)> > Draw close. Hold hands. Life is short. God is good.>Hi linda, I was diagnoised oct.2005 with NSIP I also have raynaudsand in march 2006 I was diagnoised with sclerederma but eveluating myhealth and job still being done chemicals were the cause ofr my lungsand I used a jackhammer for 11 years which can cause raynauds ..mydoc. are just waiting for me to start medication ......I was veryathletically active before 5 years ago. though running and swimminghas reduced drasticly ,joining rehab,and learning about my limits anddiet building my immune system using natural suppliments is workingfor me. Ihave stayed stable since jan 2006. Ive found support,information , comfort in this group that has grown since I joined laSTFALL finding out what works for you isn the key and I do believe inlots of mirlces!! doris NSIP PF SCLERODERMA 2005