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Thread: Newly diagnosed with SLE

  1. #1
    Join Date
    Jan 2012
    Thanked 2 Times in 2 Posts

    Default Newly diagnosed with SLE

    Hi all,

    Just to introduce myself, I've received my systemic lupus erythematosus diagnosis on January 16th. My biggest problem was the recurring BRAOs (branch retinal aterial occlusion) over the last 5 - 5 1/2 years. They kept testing me for all the usual causes and I kept on passing those tests. The doctors would just scratch their heads and look at me as if they were completely stumped. My family doctor diagnosed vasculitis last summer, and that was when the headaches started. I sort of gave up in frustration for a while, then I had another huge BRAO in November. The eye doc referred me to a rheumatologist who then examined me and found that I had inflammatory polyarthropathy with synovitis in the hands, elbows, shoulders, hips, and feet. I told her I could write all that off to old age except for the BRAOs. The fatigue, the memory loss, and the joint pain I just figured I'd have to live with, but I had two blood tests come back positive for ANAs. I had mouth sores in the past which I had forgotten about until she asked me if I ever had them. I also discovered a faint pink rash on my face which I had never noticed before, and two of the mouth ulcers came back.

    She has me on a low dose of methotrexate to start and 10 mg prednisone for 3-5 days for flares. The pain level hasn't been easy lately as the neurologist I'm seeing for the vasculitis forbade all pain meds. I'm going back to him to discuss my brain MRI on the 31st Jan. so I'm hoping he'll release something, I can't even take an aspirin!

    Sometimes I think we put up with more than we should just because we are women, and we take care of everyone and everything else first. I'm trying to keep a positive outlook but when I read some of the horror stories of the folks who have really suffered with this, it's hard not to worry just a little about what the future holds. So far it doesn't seem that bad, and I know some people who have gone through cancer and chemo, etc., so I'm grateful that what I have isn't worse.

    Thanks for listening to my rant and I hope to be able to contribute here as my journey unfolds. I'm trying to inform people gently and on an as-needed basis as I don't know what their reactions will be.


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    tgal (01-22-2012)

  3. #2
    Join Date
    Nov 2008
    hervey bay queensland australia
    Thanked 209 Times in 178 Posts


    welcome to our whl family and do not worry we do not think you are ranting we all vent here finding out you have sle can be scary at first. yes i agree as women sometimes we do not take care of ourselves first and i have done this on numerous occasions i can tell you with the upmost conviction from experience you need to take care of yourself first otherwise you become to sick to take care of others i to am on mexotrexate as am a lot of us we also take plaquenil and prednisone. it is sometimes hard to explain to people about lupus because they do not understand or have not heard of it. because there is no specific test just to diagnose lupus they go on your symptoms to diagnose you. i always suggest to new members to keep diary of symptoms and of any questions you might have for your doctors so when you go to see them you know what to ask. hopefully they will be able to find the right medication for your pain and your flares to give you some relief and just remember you are now part of our family and we are here to support you. just browse around at the different posts and you may find some solace in knowing you are not alone good luck at doctors appointment.

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    AmishCake (01-23-2012)

  5. #3
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    First let me welcome you to WHL. This is the perfect place for you to come and vent because most of us have been through the same things you have.

    I have to agree that we go through so much and make excuses such as "we are just getting old". I did all of that myself. Try not to be scared. Lupus no longer has to be a death sentence. We now have meds that can basically keep things at bay. While there is no cure you can live a long life with it. It may not be the life that you thought you would have but it still can be very good.

    Welcome to our family. We are glad to have you

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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    AmishCake (01-23-2012)

  7. #4
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Welcome to our family Here, there is no such thing as "ranting" (as other members have also mentioned). It is important to us that you feel safe enough to discuss your Lupus issues with us and know that we will not judge and that we understand.
    I am sorry to hear that you are dealing with so many issues and that you've been diagnosed with this disease. However, it sounds as if your rheumatologist is a pro-active doctor as your treatment seems to be very appropriate. I do hope that you are allowed to start taking something for the pain, but maybe once the inflammation starts to respond to the medication, the pain will also subside a bit.
    Please know that we are so happy that you are here; there is always someone here when you are in need and we are all more than happy to help in any way that we can.

    Peace and Blessings
    Look For The Good and Praise It!

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    AmishCake (01-23-2012)

  9. #5
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    hi and welcome to your new cyber family.
    we are all here because we suffer from similar illnesses.
    lupus effects us all differently, but in many similar ways.

    i have noticed you have already started sharing in other posts.
    thank you for feeling so free with us.

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    AmishCake (01-23-2012)

  11. #6
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Hi AmishCake,
    Welcome to WHL. You are in the right place to find others who understand and are going through the same things.
    I know what you mean about thinking that it's all a part of just growing old. I've even had docs who just try to blame every symptom that I complain about to my age and menopause.
    I think that they are just looking for an excuse to get us out of their office quickly.
    You are lucky that your doctor is taking charge and getting your treatment started.
    I'm glad you found us - keep us informed.

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    AmishCake (01-23-2012)

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