Re: Trying to sort all of this out

[Guest guest]

Tammy,

Good morning and Happy New Year. It may sound odd but I'm happy to hear of the scleroderma diagnosis because it dramatically changes the picture for you.

I can't say for sure because you are not completely clear on what the doctor told you but if you indeed have fibrotic NSIP and not UIP, your prognosis has improved. I also have fibrotic nsip and last year was diagnosed with Dermatomyositis (a connective tissue/auto-immune disease) that is thought to be the cause of my lung condition. Depending on what you read, the life expectancy for fibrotic nsip is said to be anywhere from 5 to 15 years but honestly Tammy predictions like that are almost meaningless to me.

I see a doctor at Duke who strongly discourages me from thinking of myself as one of those statistics. He says he has known people with nsip who have been stable "for decades". No guarantees of course and such information is 'anecdotal' but I'm not a statistic. I'm a single individual, an anecdote myself and it's good to have someone put a positive spin on all this for me and remind me to continue to live my life.

It sounds like they started you on Cellcept in an effort to both treat the scleroderma and slow or halt the progress of the lung disease. Whether you have nsip or uip or a combination of the two they would probably be doing that regardless. The scleroderma gives them something to treat. The Scleroderma Foundations website has a section of medical articles on scleroderma and lung disease. You might want to take a look there. http://www.scleroderma.org/medical/pulmonary.shtm

Honestly Tammy from where I sit it sounds as though you need to get back in touch with your contact person at UCLA and ask for some clarification. If you can have a conversation with someone who can explain all this to you, maybe on speaker phone so someone can listen with you and take notes and ask questions also. I do understand how overwhelming this is. The first time I saw the specialist at Columbia in NY my sister came with me. She brought a notebook and just wrote down everything that was being said. It was so reassuring to know that as I was just trying to sit there and not burst into tears. Ask for copies of reports and results so that you have your own records. I can't stress the importance of this enough.

Keep coming back here. This "air family" is here for you and we want to help. Look after yourself and love your children. I wish you many years of stability!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, January 4, 2010 6:37:31 AMSubject: Trying to sort all of this out

Hello everyone. So as most of you already know I went to UCLA and was told from the doctors there that I have scleroderma and that this is what is causing my lung disease. The Doctor out there started me on cellcept 500mg BID x30days then 1000mg BID for 60days then I am to return to california to be re-evaluated. I have read so much stuff that I feel like I can't digest it all so I am coming here to see what all of you have found in your experiences. Bruce and Beth you two inspire me every single day!!!!!!!! I am only 35 years old and have 4 young children who need a mommy around for many years too come and with all of your insight I feel like this may be possible. So here are some of my questions1) does this mean that my pulmonary fibrosis is not IPF-UIP like they originally told me? (the doctor in california said something about NSIP fibrotic) what does that mean.2)If it is still considered UIP-IPF then why am I on cellcept what I

can find says nothing really works for this type of PF.3)Is the prognosis just as bad if the scleroderma is causing my lung disease?4) has anyone ever heard of Serracor-NK it claims to help prevent the further build up of fibrotic tissue? Any experience with it? I am sorry to ask so many questions it is all so confusing to me still and I am overwhelmed with so many different ideas it is hard to sort through them and find a starting place. Any insight would be greatly appreciated. Thanks in advance to all of you wonderful people who help me get through each day. Tammy IPF-UIP10/09 Scleroderma 11/09

[Guest guest]

Tammy

So glad you went to UCLA. Another example of going to an ILD center and

learning more.

While IPF is possible at your age, it is less probable and a reason

certainly they would look for other causes as they did. Scleroderma is a

connective tissue disease and a cause of pulmonary fibrosis. You also

need to be careful with your oxygen use, if on oxygen, monitoring your

saturation, and avoiding pulmonary hypertension.

Fibrotic NSIP is quite possibly the diagnosis now, but you need to

further discuss that with the doctors at UCLA. The best thing is that

they've found an underlying condition and very likely cause and have a

better understanding of what is going on. While there is still no cure,

they can work to control symptoms and minimize progression.

While I'm not going to say the prognosis is suddenly good, your question

was " is it as bad. " The answer is no, it isn't.

Serracor-NK claims to solve nearly all the world's problems from

fibrosis to fixing the economy (ok, I exaggerated on the economy) but is

not proven on anything. You have a condition with traditional treatments

and your doctors are pursuing those paths. Do not take anything other

than what they prescribe, including supplements. If you are interested

in taking something else, discuss it with your doctors.

So glad your experience at UCLA was enlightening. Now, take your meds,

enjoy your life and your kids. Don't think of it anymore than you must

until you go back in 90 days. Then take it from there. Think those magic

words " stable " and hope for stability for as long as possible.

>

> Hello everyone. So as most of you already know I went to UCLA and was

told from the doctors there that I have scleroderma and that this is

what is causing my lung disease. The Doctor out there started me on

cellcept 500mg BID x30days then 1000mg BID for 60days then I am to

return to california to be re-evaluated. I have read so much stuff that

I feel like I can't digest it all so I am coming here to see what all of

you have found in your experiences.

> Bruce and Beth you two inspire me every single day!!!!!!!! I am

only 35 years old and have 4 young children who need a mommy around for

many years too come and with all of your insight I feel like this may be

possible. So here are some of my questions

> 1) does this mean that my pulmonary fibrosis is not IPF-UIP like they

originally told me? (the doctor in california said something about NSIP

fibrotic) what does that mean.

> 2)If it is still considered UIP-IPF then why am I on cellcept what I

can find says nothing really works for this type of PF.

> 3)Is the prognosis just as bad if the scleroderma is causing my lung

disease?

> 4) has anyone ever heard of Serracor-NK it claims to help prevent the

further build up of fibrotic tissue? Any experience with it?

> I am sorry to ask so many questions it is all so confusing to me still

and I am overwhelmed with so many different ideas it is hard to sort

through them and find a starting place. Any insight would be greatly

appreciated. Thanks in advance to all of you wonderful people who help

me get through each day. Tammy IPF-UIP10/09 Scleroderma 11/09

>

[Guest guest]

Beth,

Thanks so much for the response to all my questions. It seems that most days I

handle everything well and get through the day without focusing on this disease

too much however as we all know there are somedays that SUCK. Having knowledge

is powerful and I like having some power over this disease so thanks a million

for helping me gain some. I set up a phone conference call next week with the

doctors in california so hopefully they will be able to answer some of my

questions also. Your input is invaluable to me and I cherish the ability to come

here and talk freely and know that someone understands. God Bless all of my " air

family " I love you guys lots.

>

> Tammy,

> Good morning and Happy New Year. It may sound odd but I'm happy to hear of the

scleroderma diagnosis because it dramatically changes the picture for you.

>

> I can't say for sure because you are not completely clear on what the doctor

told you but if you indeed have fibrotic NSIP and not UIP, your prognosis has

improved. I also have fibrotic nsip and last year was diagnosed with

Dermatomyositis (a connective tissue/auto-immune disease) that is thought to be

the cause of my lung condition. Depending on what you read, the life expectancy

for fibrotic nsip is said to be anywhere from 5 to 15 years but honestly

Tammy predictions like that are almost meaningless to me. 

> I see a doctor at Duke who strongly discourages me from thinking of myself as

one of those statistics. He says he has known people with nsip who have been

stable  " for decades " . No guarantees of course and such information is

'anecdotal' but I'm not a statistic. I'm a single individual, an anecdote

myself and it's good to have someone put a positive spin on all this for me

and remind me to continue to live my life.

>

> It sounds like they started you on Cellcept in an effort to both treat the

scleroderma and slow or halt the progress of the lung disease. Whether you have

nsip or uip or a combination of the two they would probably be doing that

regardless. The scleroderma gives them something to treat. The Scleroderma

Foundations website has a section of medical articles on scleroderma and lung

disease. You might want to take a look there.

> http://www.scleroderma.org/medical/pulmonary.shtm

>

> Honestly Tammy from where I sit it sounds as though you need to get back in

touch with your contact person at UCLA and ask for some clarification. If you

can have a conversation with someone who can explain all this to you, maybe on

speaker phone so someone can listen with you and take notes and ask questions

also.  I do understand how overwhelming this is. The first time I saw the

specialist at Columbia in NY my sister came with me. She brought a notebook and

just wrote down everything that was being said. It was so reassuring to know

that as I was just trying to sit there and not burst into tears.  Ask for

copies of reports and results so that you have your own records. I can't stress

the importance of this enough.

>

> Keep coming back here. This " air family " is here for you and we want to help.

Look after yourself and love your children. I wish you many years of stability!

>

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

> ________________________________

>

> To: Breathe-Support

> Sent: Mon, January 4, 2010 6:37:31 AM

> Subject: Trying to sort all of this out

>

>  

> Hello everyone. So as most of you already know I went to UCLA and was told

from the doctors there that I have scleroderma and that this is what is causing

my lung disease. The Doctor out there started me on cellcept 500mg BID x30days

then 1000mg BID for 60days then I am to return to california to be re-evaluated.

I have read so much stuff that I feel like I can't digest it all so I am coming

here to see what all of you have found in your experiences.

> Bruce and Beth you two inspire me every single day!!!!!!!! I am only 35

years old and have 4 young children who need a mommy around for many years too

come and with all of your insight I feel like this may be possible. So here are

some of my questions

> 1) does this mean that my pulmonary fibrosis is not IPF-UIP like they

originally told me? (the doctor in california said something about NSIP

fibrotic) what does that mean.

> 2)If it is still considered UIP-IPF then why am I on cellcept what I can find

says nothing really works for this type of PF.

> 3)Is the prognosis just as bad if the scleroderma is causing my lung disease?

> 4) has anyone ever heard of Serracor-NK it claims to help prevent the further

build up of fibrotic tissue? Any experience with it?

> I am sorry to ask so many questions it is all so confusing to me still and I

am overwhelmed with so many different ideas it is hard to sort through them and

find a starting place. Any insight would be greatly appreciated. Thanks in

advance to all of you wonderful people who help me get through each day. Tammy

IPF-UIP10/09 Scleroderma 11/09

>