peanut

Remission

9 posts in this topic

When does remission occur? Is it when a person is stable for a long period of time? Or does it occur when your body returns to normal and is not dependant on drugs, or very few drugs? Can people with scleroderma go back to "normal"?

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Peanut...

Hey girl! I read your message but do not have any answers....but you know when you post a message and a bunch of people read and don't respond....and you're wondering when someone's going to post something...ha ha...well, here's your first post. Sike.

 

I am so happy for you and hope you and your hubby can move forward with your lives together.

 

XoOOxx,

Jennifer

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Very good question/questions!! I have been wondering the same thing!!

 

I would love to hear from anyone that has actually gone into remission too.

 

Sakar

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I was just thinking... that we are all trying to get our bodies to stabilize preventing further progression and eventually leading to remission, but how will I know when I’m there?

 

sometimes I think too hard

 

Jen - thanks for the email!!!

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Now that I think back.......I remember at my last rheumatologist visit she said 'since there is no CURE for Scleroderma....our main goal is to get me into remission'.

 

So next time I have my appointment - I will most definately ask her if she could explain a little more in detail what that entails.

 

Sakar

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Hi girls!

 

I was diagnosed with CReST almost 4 years ago, but the disease was activated 6 years ago, when my son was born.

 

I'm currently in remission, meaning that my disease is not active at the moment. My skin is not getting any harder and I don't have aches and pains.

 

Unfortunately, I'm not back "to where I started". The skin that was already hard is not getting any softer (sp. my fingers) , as too much collagen has been deposited there already.

 

But the fact that things are not progressing is quite relieving.

 

Healing wishes everyones way,

 

Claudia

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Hi Peanut--

 

Read sclero.org info on stem cell transplants. Some patients actually get better. Many cases of "remission" included a return to normal of their skin etc. So some people experience a healing of things that were damaged.

 

I have heard that lungs are really hard to heal after fibrosis damage, and tend to stay damaged even if there is no sign of sclero in the blood or clinically.

 

Michael in Florida

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See how many responses Jennifer initiated???? My daughter's dermatologist has suggested that her course of illness *tends* to burn itself out in 3 to 5 years. So far, she is on that track, as it has not spread, and all tests are normal. He has suggested that we consider UVA/light therapy and muscle stimulation when she is older and the disease is "gone." I think this disease can stop its progression--maybe that's what is meant by remission. Her rheumatologist is more conservative, but does agree that it can burn itself out over time.

 

Take care,

 

Jennifer (Jordan's Mommy)

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WOW, I hope that it is true that it will go into remission. Guess I have a long way to go. Just diagnosed in Jan. 07 and last week got the news that my diffuse sclero is in my lungs and kidneys now. It's all I can do to stay off of the couch. Good Lunck to you!!!

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