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Thread: Diagnosed with Lupus in 06

  1. #11
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    Welcome Dona. I think you will find many people with so much good information for you here - I know I have.
    Keep well,
    Batch007
    Life is a highway, remember, you choose your direction.

  2. #12
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    Quote Originally Posted by KathyW1958
    Hi Dona,
    Yes I am doing a lot better since I got diagnosed. I still have flares every now and then, but the medications do definitely help. Lupus tends to run in cycles if you know what I mean. There is no cure and unfortunately no matter what medications you take the illness will flare up. A lot of the flares are my own fault. I am very sensitive to the sun and its UV rays and at times I have to go out in the sun. I use sunscreen every day and things like that and I always wear long pants and long sleeved shirts. When I was younger I did not protect myself fron the sun and have paid for it dearly by the scars on my arms and hands and face from the Lupus lesions. I also have Sjogrens and Pompholyx Eczema on my hands and feet. I have Osteo of the Spine. I also have Celiacs Spru. I am doing a lot better with the dietary restrictions and the medications since being diagnosed with Lupus in 1996. I believe that had I not gotten diagnosed when I did that I would not be here amongst the living today, because the Lupus was attacking my heart muscle and it was causing me to have a severe heart arythmia and that could have killed me instantly, from what my doctor told me after he got me through that. Anyways, yes the medication is definitely helping me and I am also RO positive. Are you doing much better since being diagnosed?

    Hugs,
    Kathy
    Hi Kathy,
    I'm sorry to hear that happened to you, and that your ok. As for my Lupus right now, its been pretty good, but now I"m just having to deal with this Avascular Necrosis, of my hips and I'm hoping that I can get that under control. Being on large doses of Prednisone does not help at all...but have to have something to control your Lupus.
    If you don't mind me asking how old are you? I'm glad I got to know alittle about your condition and I hope to talk to you soon!!

    sweetdoconnell

  3. #13
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    Hi Dona,
    I will be 50 years old in December. I have been lucky and not had to go on high doses of Prednisone. I was on a high dose of Prednisone when I first got diagnosed, but thank heavens the Plaquenil and the NSAIDs and the Imuran have gotten me pretty much under control. I am sorry to hear about the Necrosis of your hips. That is unfortunately one of the things that can happen with the use of Prednisone. I dislike Prednisone due to the side affects of it. I know that in certain cases Prednisone may be the only option. I take Prednisone, but only in low doses when I go into a bad flare. The sun is my worst enemy and I try to avoid it as much as possible. Is the doctor talking with you about possible hip replacement? I wish that they could find a cure for this illness, but until then we have to live with it the best we can. I think that it is one of the most mind boggling things I have ever had to deal with. I have two children that are grown up now and on their own. I have a new beautiful little grandson, named Tyler, that was born on June 4th. I am doing ok with the illness. I hope that you can get relief from the Avascular Necrosis of your hips. God Bless.

    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  4. #14
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    Hi Donna -
    I was looking thru old post for some medicine info, and came across your post... I forgot there was another Boston girl on this site.
    I will be 41 next month and have two kids: girl - almost 18 and boy, 10. TAhis humididty is a KILLER, huh? Write me anytime!
    Love Lauri
    Quincy
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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