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Prognoses with CREST?


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#1 rainbow

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Posted 13 September 2008 - 01:56 AM

Hei!
Does anyone know what the prognoses are with Crest? I guess this is different from person to person. But is it possible to say something in general? Does it usually shorten your life, og can you die old WITH Crest and not FROM Crest? I hope so! Trying to find some comfort here, because I am worried about the future....
What does a person with Crest die from, if he dies from the illness? Are there no medication to stop the fatal developent of Crest?
I don't have one single symtom of Crest... I have just found out that I have anti-centromere antibodies, and that's all. I hope I will have a long and good life, av hopefully never develop Crest. Are there any chance the blood test can turn negative if I take a new one in a while?
I am thankfull for any answer...

#2 Sheryl

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Posted 13 September 2008 - 02:14 AM

Rainbow, you can live a long life with Crest. You can live a long time with Limited or Diffuse Scleroderma with or without Crest. None of us know what we may die from or because of. We won't neccessarily die from something that Sclero has caused. If we don't have heart involvement we could still have a heart attack. If we take care of ourselves as best as we medically can and do things that are the best thing to do for our health we can help our systems to work better. We can't control what part of our system gets attacked. We can only get medical help to rectify each problem as they occur. We will do the same things that other people do. We seek help as things befall us. Be optimistic, think positive thoughts and protect you body from cold, eat well, and exercise. Those are a few things that will help our systems. People can live very long lives with Scleroderma we just are more aware of protecting every aspect of our lives. A cronic illness makes a person more protective of their time and their families. Keep your chin up.
Strength and Warmth,
Sheryl

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#3 rainbow

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Posted 13 September 2008 - 02:27 AM

Thank you for your answer! What worries me the most is that I am just 28 years old.. and many symptoms can show ut before I am 40.... What will the future bring? Do I get to have grandchildren? Do I get to grow old with my husband?
It would be better to get the diagnose at 50, and then be able to live a normally long life.... But as I said I don't hva a diagnose yet... and hopefully won't get. It's just that the anti-centromere result has made me depresses by thinking about what MIGHT happen. The stories that I read about Crest scares me..

#4 Cheryle

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Posted 13 September 2008 - 02:45 AM

Rainbow ,
Did you get the private message I sent to you?
Cheryle

#5 Sheryl

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Posted 13 September 2008 - 05:27 AM

Rainbow, try not to worry about things in the early stages of development. If you have anticentromere results saying something may or could develop who knows when or if that will even happen. It could take years or until you are 50ish to develop into something. Nothing may ever develop. Conditions can occur and change our lives at any given time. We can't control some things. We can control other things. I was told I had 5 years to live. That perticular doctor didn't know what he was talking about. He sure scared me though. He assumed I had diffuse and gave me warnings. My 5 years are up. I'm still here and going strong. I even feel better than I did 6 years ago. As situations occur get to the doctor and get yourself taken care of. We are no different than other people will ailments. We just need closer supervision during flares and usually have more than just one thing going on at a time. Stay calm and enjoy growing old with your husband. Enjoy your children so you can enjoy your grandkids. Do things that are healthy for yourself and your family.
Strength and Warmth,
Sheryl

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#6 canon

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Posted 13 September 2008 - 10:02 AM

Hi rainbow,

You could ask the doctor why he/she tested for anti centromeres. A positive ana for a specific autoimmune disease like graves disease can be in the blood of siblings or children if there parents or a sibling has the disease but they themselves do not have it. Doctors usually will tell a person they should be tested periodically and watch for certain symptoms of the disease even if their blood work is negative simply because other family members had graves disease, this is only an example.

Some of us have had CREST or portions of CREST for many years and not been diagnosed until recently. Alot of people are now grand mothers and still married.

I'm not sure what articles you have read but I have not read too many that have given a dealth sentence with the diagnosis of CREST alone. Please read the articles on this website to give you a better understanding. It does help to know as much as you can.

Take care,

Judy
A happy heart is good medicine.

#7 smurfette

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Posted 14 September 2008 - 02:54 PM

Rainbow,
No one knows how much time they have - you can be perfectly healthy and get killed crossing the street! I am sure you have heard that one. When it is your time it is your time. Enjoy the time you have and don't stress because that is not good for any of us- no matter how healthy you are we all react negatively to that! Doctors are only practicing, they do not have crystal balls that can help them see into the future. They can and often are wrong.

The choice then is ours. We can curl up into little angry balls of pain and anger or just live each day as fully as we can. It is a shock when we hear our diagnosis - or lack there of and just deal with the symptoms and continuing pains and discomforts. This stuff does not go away. In your case it may not even exist! You may have absolutely nothing to even be concerned about!

But if you do, join the rest of us. We can try to enjoy each day and live honestly and with integrity and principles so that we are proud of ourselves whether we are ill or not. At the end of each day we can reflect and say that we did not do anything that we truly regret. If we do that the time that we do have is lived well. No one can ask for more than that. We all have our form of this awful disease. The common thread is that we "spend" our humanity in a way that makes us proud of our time here.

We are not perfect and we cannot expect to be more perfect than those without disease. But having this disease often makes us more aware of the value of time, connections to loved ones and the unimportance of material things, petty disagreements and other insignificant things that those who have no disease have time and energy to quibble over. It is not that we are better people, it is that we have less energy and patience. We have a more narrow focus and those things we do care about are more real - pain, disease, getting food on the table, can I dress myself today, can I get to work today, more mundane yet more real than whether my shoes are Prada or Payless.

I have gone on, but this disease is not the end of your world or life. I have been diagnosed for 10 years and if you saw me you would not know. I work a few days a week, go out and dine out several evenings a week. I am starting to slow down because my symptoms which are internal are starting to make it difficult for me, but I am also menopausal so the combination of several autoimmune diseases and menopause is a whopper. I also have high maintenance children. I am frequently there for them. My doctors do not feel that my lifespan will be appreciably shorter as a result of my disease. I probably had the disease in my late 20's or early 30's but did not even bother getting diagnosed until my kids were old enough for me to start focusing on me. It may have been set off by my first pregnancy - age 29. Do not let your age frighten you.

I wish you a long healthy life. You may very well not have any disease at all. If you do not have any symptons why did your doctor test you? Sometimes people test positive and have no disease and nothing turns up. Talk to your doctor. Calm your fears and don't stress.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#8 Snowbird

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Posted 14 September 2008 - 04:24 PM

Hi Rainbow

I'm catching up on my reading here and have answered on your other thread here from last week.
Sending good wishes your way!

#9 jefa

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Posted 14 September 2008 - 09:54 PM

Hello, rainbow.

I am glad to see you are getting so many responses. Here is our page called What is CREST Syndrome? which should answer many of your questions.


Warm wishes,
Jefa

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#10 mutsy67

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Posted 15 September 2008 - 07:55 AM

Hi Rainbow!
I think there is a 'process' that we go through when we get a diagnosis - much like the grieving process of losing a loved one. Probably fear is the first phase - and I expect it to be an ongoing issue to face (at least for me it is). Support will help you through the fear - whether you get that with friends, family and/or this board. ;)

I saw a page once that gave the actual statistics. I don't have it anymore but I know that it was much higher survival rate for CREST then diffuse and it varied a lot depending on the organs involved. To me that meant getting a baseline for heart, kidneys, lungs and gastro. I've done all of that and found out that my kidneys are heart are good. My lungs and gastro areas are "involved" - so I now have medicines and information on how to improve those areas and know what to look for in the future for any further develpments, etc.

For me - knowledge is power. I want to know everything I can. And yes, it does scare me to read it - but after a few days (weeks) of mulling it over I come out of it and realize how much I have to live for and that it just means I work harder at that than what I was expecting. For me the unknown is scarier then reality.

good luck - take a deep breath and surround yourself with the things that make you feel good!
Shari
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#11 Annie20

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Posted 15 September 2008 - 10:10 AM

Sheryl,

I totally agree with you. I've had Systemic Sclerosis since 1999, (lung, & skin involvement). And back in February of this year, I was hospitalized for 3 weeks - had congestive heart failure, doctors believe it was a nasty virus when I returned from Atlanta, GA., seeing other girlfriends who have scleroderma whom we formed a close relationship. My doctors believe it was totally unrelated to scleroderma. After that frightening incident, my family, husband & 16 yr. old daughter are very protective of my health. In time, they have cut me some slack, but do not want me to fly for awhile. I'll wait until next spring to fly! :) Life can be inevitable. I truly believe scleroderma won't kill me, it'll be something else such as walking at the end of my drive way to get the newspaper and mail and get struck by a vehicle, etc......

Anne
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#12 rainbow

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Posted 17 September 2008 - 08:48 AM

Hi!
I have talked to the Reumatologist again now, because he was so kind to call me to answer all my questions. This is what he told me - perhaps it can be usefull for others too:

What are the prognoses with CREST?
- Good. It is slowly progressing. In your case, where you don't have any symptoms yet, the prognoses are especially good - if you have the Crest at all. The Raynauds is present in over 90% of the cases, and remember that you don't have that. The most serious thing with Crest is lung/heart-involvement.

How often is the lung/heart involved in Crest?
- In 10-15% of the cases.

I am afraid of dying if I get Crest!
- You don't have to be! You are absolutely not dying! The only thing happening if you get Crest, is that you will be controlled from time to time, and your local hospital is good at it.


So this is some of the things he told me.. and it was good to hear. The fact that just 10-15 % of the Crest-patients have lung/heart-involvement means that even if I have Crest there's a 85-90% chance it won't kill me. Am I right?

And there is one ting I would like to ask you: Have any of you experienced that scleroderma/Crest started during a pregnancy/after giving birth. I want to have another child, and the reumatologist told me I could with no risk. But I have read in here that for some of you it all started with a pregnancy. Since I have the anti-centromere in my blood, I don't want to take a risk of starting Crest by getting pregnant.. But the rheumatologist said there was now statistics about this..