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Thread: Sle

  1. #1
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    Default Sle

    Hi I'm Anne.
    I just been diagnosed with SLE.
    I very scared what the specialist said ,of 50% moretality rate in the first 5years.

    Which is very distressful an is making my husband and I think the worst.

    The symtons I have are as follows:

    1.When breathing hard I get chest pains
    2. All joints are giving pain and swelling
    3. Muscle inflammation
    4. Fever and sore throat hard to swallow
    5. Very tired and fatigued

    Also I have be prescribed Prednisolone 35g a day, when I take it I feel better.
    But soon as I move or do any work I feel sore .

    Does anyone. Have any feed back or solutions to help.

    Thanks
    Anne an Simon

  2. #2
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    Default

    I don't know what your circumstances are, but 50% mortality in 5 years doesn't sound right at all...with timely diagnosis and treatment, many (if not most) people now live a normal or near-normal lifespan. Lupus used to be very serious and often was life-threatening, but in the last 30 years or so treatment has come a LONG way, and it's more of a manageable condition for most of us at this point.

    If left untreated, it definitely CAN get very serious very quickly - that's why it's so important to work with your doctors to keep things under control as best you can.

    Don't be afraid to ask your doctor lots and lots of questions....

  3. The Following User Says Thank You to SleepyInSeattle For This Useful Post:

    Si19 (05-31-2013)

  4. #3
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    Default

    It is Not a death sentence. Your doctor needs to choose his words more carefully.
    Is your specialist a rheumatologist?
    We have lots of members here, who have had Lupus Sle for a long time.
    I was diagnosed in 2006.
    Why don't you read some of the threads here, it will give you a better understanding.
    If you have any questions, just ask, we will try and explain things to you.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Si19 (05-31-2013)

  6. #4
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    Default

    Hi Debbie,

    Yes he is a rheumatologist .

    It's just been a roller coaster ride , my weight loss in 12 weeks is 9Kg.
    Then the pain and discomfort also tiredness and not sleeping during night very well.
    My prescribe dosage has been upped and I have more tests in 3 weeks.


    But thank you for your reply I will look at what you said

  7. #5
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Default

    Hi Si19,

    Your Rheumatologist is giving you some outdated, and frankly, bad information.

    Below is a quote from this website-

    http://www.everydayhealth.com/lupus/...ing-lupus.aspx

    "What Is the Prognosis for Patients With Lupus?
    A "prognosis" is a prediction of how your disease will affect you over time. The overall prognosis for people with lupus has improved a great deal in recent years. The 5-year survival rate for lupus patients seen at Johns Hopkins University from 1949 to 1953 was only 50 percent; today the 5-year survival rate is over 90 percent and the 20-year survival rate is over 80 percent.
    "

    I've been living with SLE for almost ten years now, and my mother has lived with it for 23 years.

    These Rheumo/Doctors really need to be more careful in what they tell the newly diagnosed.

    Hope this helps,

    Rob

    PS-Welcome to WHL!

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    Si19 (06-01-2013)

  9. #6
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    Default

    Hi Anne, I replied to the other thread. As Rob suggested your doctors info isn't quite up to date. I don't know where you are but seeing another doctor for a second opinion and asking more questions is definitely advisable. If what he said was a universal truth I'd be long gone.

    Hugs and GoodThoughts

  10. #7
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    Default

    Hi!
    I've had lupus since 1990 and I'M STILL HERE!


    Jx

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