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Thread: May Have Lupus, need some help

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    Default May Have Lupus, need some help

    Hello everyone. I have not yet been diagnosed with Lupus, but the doctors are leaning towards it. My lab results are abnormal, and I am experiencing a lot of symptoms that are specific to Lupus. The most prominint one is extreme fatigue. Can anyone give me some advice or words of wisdom? I have an appiointment for a Rhuematologist in 5 weeks. I think I might go crazy if I have to wait that long!

    I have a little bumps on my forehead that have been there for years. I dont know if it is a rash or acne. I do notice that when I am in the sun ( even if its for 5 minutes) they get red and also develop red marks across my checks. I cant get rid of them, no matter what kind of face wash I use.

    Everyone around me is telling me that it is going to be ok, dont worry, your not even diagnosed yet. But I just dont feel right. I have been going through test for years, because my labs are always off. One doctor told me that it was just my normal. I coulndt believe that, especially with all the symptoms that I have been having. I have decided to persure it now. Finally i am getting somewhere and they are testing me. My lupus test was slightly evevated. I dont want to be put on the back burner anymore. I have dealt with this long enough.

    Can anyone tell me what the treatments are? Can you work after you are diagnosed and start the treatment? I had a friend that had a really bad case, they had to take out her intestine, and now she has a colostomy bag for the rest of her life. I dont want that to happen to me.

    Sorry that I am rambiling on and on. I just want to talk to someone that has gone through or is going through what I am dealing with. I have so many questions, but that is all for now. I hope that someone out there can help me!
    Sarah

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    Hey Sarah,
    Welcome to WHL. You've come to the right place to learn and ask questions. We've all been through the ups and downs of getting a diagnosis, and it can be pretty scary at first. Read the threads on this site, especially the stickys, and learn as much as you can. Then come back and join in on our conversations and ask questions. The folks here are really helpful.
    I'm off to bed right now, but I'll come back to chat more tomorrow.
    Hugs,
    Marla

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Sarah,

    Welcome to WHL. I'm Rob, and I was diagnosed with Systemic Lupus in 2004. From the brief description you gave of your basic symptoms and labs, it sounds like Lupus is indeed a possibility. It sounds like your rash is what's known as a Malar Rash, a common Lupus symptom. Sun sensitivity and extreme fatigue are also two of the more common Lupus symptoms. I know exactly what you mean when you say that you just don't feel right.

    Should you be worried, will you be OK? When a person finds out they may have a chronic disease with no cure, they are going to worry, it's only natural. As far being OK, if you do have Lupus, and start proper treatment and make some lifestyle changes, the outlook can be excellent. Overall, most people with Lupus live long, and fulfilling lives despite the disease. It can be scary, and there are bad days to be sure, but Lupus is not an automatic end by any means.

    You are doing all the right things at this point. Both you, and your Dr.'s are in agreement that you may have Lupus. You are actively seeking out good information about the disease so you can be an educated patient, and an advocate for yourself. You have an appointment with the proper specialist who can make a Lupus diagnosis. And you are asking for support to help you through this. Support from others who have been where you are now, can make the long nights of worry not so long, and not so frightening.

    As far as treatments, there are some fairly effective drugs available to keep the disease activity under control. The most common drug is Plaquenil. It is well tolerated, has few side effects, and really makes the symptoms of the disease tolerable for many people. There are also steroids like Prednisolone. Steroids can be very effective, but I won't kid you, they can have some serious side effects. If you look at the "sticky" topics at the top of each forum page, you will see some good info about alot of relevant subjects including detailed info on various treatments.

    I hope you don't have Lupus, but if you do, you need to know so you can get proper treatment, and get on with living your life. Lupus affects everyone differently. Some people still work, others can't. I had to go on full disability after my 2004 diagnosis. Have hope. Like I said, Lupus is not an end. Take me for example. I have not one, but two autoimmune disorders, and they are "the biggies", Systemic Lupus, and Multiple Sclerosis. I have my bad days, but I also have plenty of good ones, and I live a very fulfilling, and good life despite them.

    Please feel free to talk, and ask any and all questions you have. And don't worry, you're not rambling! Welcome to our group Sarah.

    Rob

    PS- If some Dr. told me my abnormal labs were just "my normal", I'd fire his/her sorry butt!
    Last edited by rob; 05-04-2010 at 07:33 PM.

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    SarahK21 (05-04-2010)

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    Hi Sarah,

    Everything rob said was perfect. I too hope you don't have Lupus, I am being tested for having 3 autoimmune diseases myself right now (SLE, RA and Sjogrens), but whatever happens, there are good doctors out there and treatments that can help and you can continue on having a normal life! It definitely can be scarey and shocking, I'm young (23) and just don't like dealing with any of this but I need to stay positive and keep trudging forward.
    I am being treated with Prednisone right now, and as rob said yes it can have some nasty side affects, but for me overall it helps me better than when I was on Plaquenil, it just depends on the person.
    It sounds like you have found a good specialist now, stick with him/her! All you can do is keep looking for another doctor when you don't feel right with them, especially when they say your tests are normal when they clearly are not. I am on my 2nd specialist and I like him better than the first one I had, as he has 30 years of experience and my first one only had less than 15.
    It will all be ok, and everyone here on the forum's will be here for you.

    Welcome!

    Hunniebun (Tanya)

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    SarahK21 (05-04-2010)

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    Dear Sarah:

    Have the Drs. ever mentioned a butterfly rash on your face? That is lupus related. Another possibility is roseacea? Some people can continue working with lupus, some can't. It depends on how severe their lupus is. Some can only work p/t.

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    Hi Sarah -
    Most people live normal lives after diagnosis. My best advise to you is to try not to obsess about the negitive posiblities, be informed but keep your perspective. If you feel good enjoy it - exersize, walk, stay involved in your hobbies and persuits.
    I'm still working full time with some travel. I also take commissions (art) so have effectivly two careers -
    hang in there.
    much love to all my lupie friends -

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Sarah,

    Just an FYI-I deleted your duplicate thread in Lauri's Lounge, and moved the comments from that thread to this one so they will all be in one place. Duplicate threads are not allowed because it causes alot of confusion for both the thread author, and the people who respond.

    Thanks!

    Rob
    Moderator

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    Thank you Rob, I didn't realize that you couldn't do multiple posts. I just thought that I would try a different stream. Thanks again! It wont happen again!

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    Hi Sarah;
    I am late in welcoming you and you have been given some excellent information and advice. I just wanted to take a moment to add my welcome to those you've already received.
    Also, no need to apologize for the duplicate threads. You are new here and not expected to know all of the rules immediately. Rob is a very astute, efficient, concerned, and caring moderator and you will come to appreciate his efforts as much as we do. I'd be lost without him!!
    Again....welcome and please know that you are not alone. We are here for you: to help you, answer your questions, give you support, and let you know that we all understand!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Saysusie View Post
    Also, no need to apologize for the duplicate threads. You are new here and not expected to know all of the rules immediately. Rob is a very astute, efficient, concerned, and caring moderator and you will come to appreciate his efforts as much as we do. I'd be lost without him!!
    Of course, your hopefully humble moderator has never made this mistake himself. I also have some oceanfront property in Arizona for sale if anyone is interested...

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