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Thread: New to this, i think i have lupus..

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    Default New to this, i think i have lupus..

    So, Im Daniel, anr im being treated for lupus. But apparently im in the less than 1% of people who have lupus but my blood work shows negative for it. I have been going through all this for only 5 months now. Im still on high dose steroids but am attempting a taper now. The last taper i tried, my immune system went nuts and started attacking my blood platelets. Platelet level was down to 2800...pretty low. So thats my path with lupuz thus far. It has definetly been a hard 5 mnths.

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    Hi Daniel,

    Welcome to WHL.
    Yes, Lupus is a hard disease to deal with, but it will get easier as time goes on.
    What kind of symptoms do you have? Are you taking anything besides steriods?
    If you have any questions at all, just ask.

    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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    Thanks for welcome, Debbie! Right now i feel as though im on every drug known to man. Im on cellcept, prednisone(of course), plaquenil, a pain med, and then various vitamins, and a multivitsmin. Im down to thirty mg on my pred taper. But i think im starting to flare up today. Have a few sore joints and my rash has flared up on the upper part of my legs and my arms. I wish this stuff would calm down and let me get off this steroid. So tired of thd weight gain, swelling, and acne these steroids are causing. Does it normally takd this long to get it undwr dome control? I feel like im just spinning my wheels. The rash and pain all but goes away one day, then the next it flares up on me snd just destroys all hope. Im very conflicted right now, and still havee little understanding of what lupus actually is. So much going through my mind about long term quality of life right now.

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    Hey Daniel! Welcome to the forum.
    Lupus is a pretty hard thing to have. In a way, you're lucky to be diagnosed so soon - if you've only been sick 5 months, that is. Getting diagnosed can be really hard - both to do, and to go through, but getting treated is definitely the plus, and what needs to be done. It is true that many times blood tests show up with false negatives. I think one of the worst and most frequent is people who have high levels of inflammation whose bodies are attacking themselves... but they show up with a negative ANA, and show limited/no inflammation. Crazy...and annoying.
    Anyways, i'm sorry to hear that you had to find us...but it's good to know that you did. It's a pretty great group of people here, who're all very understanding and knowledgeable of the disease.
    So, welcome. And I hope that this time the tapering goes well.


    Edit: You said you're having trouble understanding what Lupus is... this is pretty much the main Lupus site (there's more, but this is the one I most prefer to use). I'm not sure if you've read it or not, but if not, here's a link to the site with questions and answers about understanding Lupus:
    http://www.lupus.org/webmodules/weba...231&zoneid=523

    What is Lupus (Link)


    Basically, Lupus is an Autoimmune disease. What happens is that something goes wrong with your body. Something happens, (normally after catching a virus, sometimes it can be drug induced), when your body stops recognizing your own blood cells and body as "Self", and instead labels them as "intruder". It produces antibodies to go fight what it thinks is an intruder or bad guy that needs to be killed, when in reality it's you.

    Symptoms of Lupus (link)

    Lupus can be managed and gotten under control with the right medications and therapy. Unfortunately, every case is different, so it can take a while not only to find the correct dosage and type of drugs..but for the medications to work. The good news is, Lupus isn't a death sentence, and you should be able to live a long, happy life, in some fun sense of normal you define for yourself.

    It's hard to get used to, I know... but you can eventually start to get back to your life, even if it wasn't the same as before.
    Last edited by Elo; 09-07-2011 at 07:58 PM.
    One day at a time, one breath at a time... We can get through this.

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    hi daniel.

    i want to give you some hope.

    i have a couple of auto immune disorders. (there is 63 of them), (it is not unusual for people to develop more than 1 at the same time).

    my lupus effects mainly my blood also.

    i am almost 50, i have had lupus for over 30 years, but only been diagnosed for about 3.
    at the moment my medication has my lupus in very good check.

    i still need my handfull of medication every day....... but my lupus is being held in check.

    the trick is to get a good doctor, (i see a rhuematologist). and to be lucky enough to get a stable balance of medications. you then need regular check ups to keep the madicine balance adjusted properly.


    it is all so confusing at first....... but there is hope.

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    Quote Originally Posted by dannymac View Post
    So, Im Daniel, anr im being treated for lupus. But apparently im in the less than 1% of people who have lupus but my blood work shows negative for it. I have been going through all this for only 5 months now. Im still on high dose steroids but am attempting a taper now. The last taper i tried, my immune system went nuts and started attacking my blood platelets. Platelet level was down to 2800...pretty low. So thats my path with lupuz thus far. It has definetly been a hard 5 mnths.
    Hello Daniel,

    Welcome to WHL. I was diagnosed with SLE in 2004, and I'm 43 years old now. When I was first diagnosed, I was on prednisone for just about 6 months when my system finally calmed down and the flare activity became manageable. I have always been physically fit and very active, and the temporary weight gain and other side effects of the steroid were very hard for me to accept and deal with. But, I was able to taper off at the 6 month mark, and with moderate exercise and watching what I ate, I lost all the weight in less than a year.

    So, I've lived with SLE for almost eight years now successfully. I found out I also have MS just about two years ago. I have that pretty much under control now too, and despite both of these diseases, my quality of life is pretty fantastic. Don't get me wrong, it's been a long, and somtimes rough road, but overall, life is good. I have a great lady in my life, and I enjoy some pretty cool hobbies that include R/C Helicopters, Kayaking, and learning to drive a dragster in competition (if we ever have a dry weekend, that is).

    Have hope, things will definitely get better.

    Rob

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