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Thread: Struggling

  1. #1
    Join Date
    Aug 2012
    Thanked 4 Times in 2 Posts

    Default Struggling

    I'm really struggling with my diagnosis of SLE. I have low platelets and proteinuria. A slightly positive ANA 1:80. However I have high levels of 6 different antibodies. My rheumy said that the Smith antibodies combined with DS DNA antibodies are enough for a SLE diagnosis. I also just found out that I had a positive anticardiolipin antibody.

    Here's where I'm struggling. I feel fine. Not any fatigue, joint pain, nada. I should just look at this as a blessing as that might change in the future, but imagine feeling perfectly fine and someone telling you you have lupus! I'm just struggling.

    I don't think it can be ignored that something is going on with the low platelets and proteinuria. I just can't figure it out. I have silicone breast implants and am wondering if perhaps I'm having a reaction to them??? I will be meeting with a plastic surgeon on Monday to discuss having them removed. They may not be the cause, but I don't think I can live with the possibility that they could be.

    Any insight on what might be going on? Did anyone else's story start out this way? The only reason they looked into
    this was because I was in a minor car accident while pregnant so I went to the hospital to get checked out. That's
    when they found the proteinuria and low platelets. Apparently I was having a lupus flare - although I felt perfectly fine. Blah.

    Thank you.
    Last edited by Ashleybritton; 09-20-2012 at 02:41 PM. Reason: Stupid auto correct

  2. #2
    Join Date
    May 2010
    Thanked 312 Times in 251 Posts


    Lupus has been attacking my blood system, and combined with my CVID defects, it can get quite weird. I have no idea if implants would contribute similar side-effects, or a reaction. It would seem to me that a reaction would be more along the lines of a rash. Maybe the plastic surgeon can tell you. Be sure and consult with that hematologist you mention in the other post. Mine was the one who got me diagnosed with SLE (and the CVID). Shtinker went and retired on me last year though...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

  3. #3
    Join Date
    Jul 2011
    suburban chicago
    Thanked 125 Times in 99 Posts


    I know how you feel.
    I fall into the feel pretty good but labs are bad group. My ruhemy actually thought I wasn't being honest with him about how I felt.
    Don't get me wrong I do have aches and pains on a daily basis and I do take 8 pills in the morning and 6 at night-but as a whole I feel pretty good most of the time.

    I do have a elevated ds-dna level which seems to really worry my drs.(last week it was down to 110)0-5 is normal.
    But I can't imagine how I might feel if I did not cooperate with my drs.

    Lupus can affect pretty much any part of your body-elevated ds-dna shows lupus is active-my question is question is active doing what?

  4. #4
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Look at it this way - if you are being watched and possibly treated prior to showing symptoms, perhaps you can keep them from showing up for a long, long time.
    Also, doesn't the positive anticardiolipin antibody have an effect on pregnancies? I assume that you've had the baby, but it's good to know about this if you plan to have any more.

  5. The Following User Says Thank You to magistramarla For This Useful Post:

    tgal (09-20-2012)

  6. #5
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    Although I have no idea how long your implants have been in I do think it is a good idea that you are going to talk to him. Dow Chemicals had to pay out a huge lawsuit because some of the older style implants caused AI type or, actual, AI diseases due to the leakage and spreading of the gel into the rest of the body. I know someone who has scholederma from hers. The current implants are made from different things and they appear to be much safer so most likely your implants are fine. I always suggest getting all the information you can so talking to your doctor is a fabulous idea. He can let you know if you are at risk.

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

    ~Winston Churchill~

  7. #6
    Join Date
    Mar 2009
    Dallas, Tx
    Thanked 418 Times in 343 Posts


    Mari is right, it is a good idea, to get the implants checked out.
    Even when I am not flaring and I feel somewhat decent, my platelets are always low, at last check, 86 - normal is 140-400. My rheumy explained to me, that the lupus is attacking the blood or blood forming organs.
    Stay on top of it with your doctors and good luck to you.

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

  8. The Following User Says Thank You to debbie-b For This Useful Post:

    tgal (09-21-2012)

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