NSIP

December 10, 2006

A good source of info on NSIP.

http://www.clevelandclinicmeded.com/diseasemanagement/pulmonary/idiopathic/idiopathic.htm

December 10, 2006

Jioyce, Thanks for the link to the information.

Joyce wrote:

> A good source of info on NSIP.

>

http://www.clevelandclinicmeded.com/diseasemanagement/pulmonary/idiopathic/idiop\

athic.htm

>

<http://www.clevelandclinicmeded.com/diseasemanagement/pulmonary/idiopathic/idio\

pathic.htm>

>

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December 18, 2006

Joyce, Thanks for your email. I had to stop the pulmonary portion of the

rehab because I tore the cartilage of my right knee, had it drained,

and went into physical rehab for the knee. I could not do the walking or

the bike which had really made a positive difference. I started back

today in the pulmonary area ( Montgomery Hospital in Norristown) and can

just do 7 minutes on the treadmill and still can't actually pedal the

bike completely but I'll get there eventually. You are right..the

activity had really helped before. I now have to get back to the 30

minutes on the treadmill . I'm determined to get there because not only

do I improve lungwise...the stress level goes way down too. I need o2

for more than exertion and I have to sleep with it too.I've gotten as

low as 15mg of Prednisone but the distressful lung symptoms came back

too aggressively and I had to go back up to 20...I'm now back down to

17.5 ( I started at 40 last September. I was diagnosed officially

September 2005.

Joyce wrote:

>

> 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

> >

>

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>

December 18, 2006

Beth, Thanks for your input. My first pulmonologist put me through

every test and the open biopsy as well. He then sent me to the

University of Pennsylvania Lung Center..the first Dr. gave me a " maybe "

on the PF but the specialists at Penn said NSIP but have yet to give me

the type. I do respond to Prednisone..but the side effects are awful. I

get very jittery, my hands shake (which is a problem because I am a

potter and sculptor). I have become very ADD, reading can be difficult,

the heartburn is a killer, sleeping is troublesome. All of the side

effects have added more drugs to deal with the trouble with the side

effects,. I've had to retire from my teaching at the college level at a

local community college. My last PFT had a very positive change I had

gone from 49% to 80%...the rehab was great for me. I had to stop because

of a knee injury that sent me to physical therapy rehab for the past 8

weeks. It's amazing how fast the benefits of the pulmonary work can

disappear. I now am starting in pulmonary again and I am determined to

get back to where I had been. I need o2 at 2 lpm most of the time and

often 3 when more active. I need to sleep with the 2 lpm as well. The

Helios at least gets me out.. You are so young..I'm 62 and a Mom Mom of

a one year old. My 3 kids are all grown and married I can't imagine

being this ill and having family to deal with too. Thanks again . Merry

Christmas and a Healthier New Year. Z./05

Beth wrote:

> 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

>

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December 18, 2006

Dee-andy...What a mess of things to deal with all at once!!!!Thanks ,

Z/05

dee-andy wrote:

> 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 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

>

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>

December 18, 2006

Thanks for your input...They haven't found any cause for my NSIP . No

chemicals, never smoked . I agree with the activity being beneficial.

In fact, the drs. said that I would have been much more ill if I hadn't

been sort of a " gym rat " for the past 6 years. in fact I had been the

healthiest I had been in decades before I became very suddenly ill in

July 0f 2005. Rehab is the best... I also want to say thank you to all

who read this posting. Your support in such a short period of tiome is

amazing to me. I just joined your group last week. I wish I had known

about you sooner. But definitely BETTER LATE THAN NEVER!!! Z. /05

solizhill wrote: