RE: a story of drugs with a happy ending

[Guest guest]

Tony,

Tracie, and all,

Let me

share a story with you, I have a wonderful Aunt, husbands side, she has been

dealing with Scleroderma for around 30 years, flare after flare after flare,

that was her life, still she continued somehow to work as a nurse. About 3

years ago they decided to put her on a drug, (sorry don’t remember the

name) but much like the one’s we take that warn us of the possibility of

cancer, but we take the chance as she did. Well she did develop lymphoma,

and the treatment for the cancer, put her cancer to rest, as well as her scleroderma,

and ever since she has felt better then she has in a very long time, and she

said it was all worth the risk!! She would do it again. Sometimes the

things they are afraid of us getting are actually better then what we are

really dealing with! A story of drugs with a happy ending.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Thursday, March 22, 2007

4:04 PM

To: Neurosarcoidosis

Subject: Re: No

pred...Cellcept

Tony,

This is a good thing. Several members are on Cellcept for their

sarcoidosis-- and it has seemed to help.

For me, I found that the combination of Methotrexate, Plaquenil and Remicade

are keeping most of the sarcoid induced arthritis at bay-- so my pain level is

much, much lower.

As for the side effects, I've found that I can lead a " fairly " normal

life as long as I make sure that I wash my hands and keep them away from my

face-- especially if I've been out shopping and pushing around the grocery

carts, and if I pass on the " Pass the Peace " handshakes, hugs, etc at

church, and such.

If someone has a cold, or the flu-- I stay away. I found myself doing my

Christmas shopping online, and so was able to not be in the masses.

As far as worrying about the possiblity of side effects of lymphoma and tb and

such with the Remicade-- as well as the MTX and Plaquenil-- it has raised my

quality of life-- and that is worth it. (If any of these side effects

actually happen, then I may change my mind..)

I think that it is so important that with any of the meds we are on-- that we

picture these meds helping us to regain the quality of life we

have. The more we live in fear of the " what if's " -- the more we

disempower our potential healing.

Even if the Cellcept doesn't work for you, there are still many others out

there that can be put together in combinations that can help.

Keep the faith,

Tracie

NS Co-owner/moderator

**************************************

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[Guest guest]

Marla,

What a beautiful story! Thank you for sharing. I give your Aunt a

lot of credit as living with the Scleroderma must have been difficult

enough...then to be diagnosed with lymphoma...I can't imagine. She

must be a very strong person in both character and faith.

Tracie,

Yes, sometimes we do focus on the negative when we should be looking

at the positive. Just over a week in on the cellcept. I'm not

seeing any changes...then again I'm far too impatient some days.

Thank you both for your kind words of encouragement and the positive

thought. Peace...Tony

>

> Tony, Tracie, and all,

>

> Let me share a story with you, I have a wonderful Aunt, husbands

side, she

> has been dealing with Scleroderma for around 30 years, flare after

flare

> after flare, that was her life, still she continued somehow to work

as a

> nurse. About 3 years ago they decided to put her on a drug, (sorry

don't

> remember the name) but much like the one's we take that warn us of

the

> possibility of cancer, but we take the chance as she did. Well she

did

> develop lymphoma, and the treatment for the cancer, put her

cancer to

> rest, as well as her scleroderma, and ever since she has felt

better then

> she has in a very long time, and she said it was all worth the

risk!! She

> would do it again. Sometimes the things they are afraid of us

getting are

> actually better then what we are really dealing with! A story of

drugs with

> a happy ending.

>

>

>

> Marla Bramer

>

> " Faith sees the invisible, believes the incredible and receives the

> impossible "

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

> Sent: Thursday, March 22, 2007 4:04 PM

> To: Neurosarcoidosis

> Subject: Re: No pred...Cellcept

>

>

>

> Tony,

> This is a good thing. Several members are on Cellcept for their

> sarcoidosis-- and it has seemed to help.

> For me, I found that the combination of Methotrexate, Plaquenil and

Remicade

> are keeping most of the sarcoid induced arthritis at bay-- so my

pain level

> is much, much lower.

> As for the side effects, I've found that I can lead a " fairly "

normal life

> as long as I make sure that I wash my hands and keep them away from

my

> face-- especially if I've been out shopping and pushing around the

grocery

> carts, and if I pass on the " Pass the Peace " handshakes, hugs, etc

at

> church, and such.

> If someone has a cold, or the flu-- I stay away. I found myself

doing my

> Christmas shopping online, and so was able to not be in the masses.

> As far as worrying about the possiblity of side effects of lymphoma

and tb

> and such with the Remicade-- as well as the MTX and Plaquenil-- it

has

> raised my quality of life-- and that is worth it. (If any of these

side

> effects actually happen, then I may change my mind..)

> I think that it is so important that with any of the meds we are on-

- that

> we picture these meds helping us to regain the quality of life we

have.

> The more we live in fear of the " what if's " -- the more we

disempower our

> potential healing.

> Even if the Cellcept doesn't work for you, there are still many

others out

> there that can be put together in combinations that can help.

> Keep the faith,

> Tracie

> NS Co-owner/moderator

>

>

> **************************************

> AOL now offers free email to everyone. Find out more about what's

free from

> AOL at http://www.aol.com.

>