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Thread: Update from my rheumy visit yesterday.

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    Default Update from my rheumy visit yesterday.

    As alot of you know, I had to stop MTX shots, a few months ago, because of high liver enzymes. Well, even
    without the MTX, the enzymes are high and all over the place.
    About three months ago, my rheumy send me to a gastro doctor, for my liver. That doctor pushed a little on my upper abdomen and said, that I have to get a upper GI(or whatever it's called, when they shove this tube down your throat into your stomach). Well I went home and thought about it and decided, since there is nothing wrong with my stomach, I am not going to pay this huge co-pay, so I didn't have it done.
    My rheumy asked me about the gastro visit yesterday and when I told him, what he wanted to do, my rheumy said, " that is insane, the gastro just wants to make money". I was shocked to hear that, even though that is what I thought as well, but hearing it from another doctor, wow.
    So here is the story. My rheumy is very afraid to give me ANY meds, until the liver thing has been resolved, because ALL meds hurt the liver in some way.
    If you have a healthy liver, it's ok, but if your liver is damaged, you can't take these meds.
    So the next step is, he will talk to the gastro and tell him, that the ONLY thing I need is a liver biopsy.
    That scared the heck out of me.
    He thinks that I have autoimmune hepatitis ( not contagous), it means the lupus is attacking my liver.
    I know Mari, you will say, " don't borrow stress", but I am very scared.
    I am going to have a huge blood test done today. The next step is the liver biopsy.
    He also dx me officially with sjoegrens, very dry eyes and dry mouth.

    Debbie
    Last edited by debbie-b; 03-15-2012 at 04:33 AM. Reason: added something
    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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    Debbie,
    That is scary. Hopefully, the docs will determine exactly what it is and figure out what meds you can take to bring it under control.
    This is exactly why I stopped taking MTX. My good rheumy in Texas was adamant about checking liver enzymes every 4-6 weeks. My current one only requests blood work once a year, and then it is just the "regular" tests, nothing aimed at the liver. I don't trust her!
    I'll be thinking about you.
    Hugs,
    Marla

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    Actually Debbie, I will only say that about the results. The biopsy itself is scary enough! I am so sorry you are going through this! I hate this disease. I hate that it attacks everything and keeps us all worrying. I hate that my friends suffer and worry because of it..

    I will be thinking of you. Keep me posted please. I am always here if you need me
    Mari

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

    ~Winston Churchill~







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    debbie,
    what i do when this sort of problem presents itself.

    i look at the alternative.
    if you do not have the biopsy .......

    to me that makes the treatment become a positive.
    it is easier to bear the pain, when it is a positive.

    it works for me.......usually.

    i hope they can offer medication to fix the liver problem.

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    Thanks guys,

    I don't get worried to often, because whatever happens, you can't change it. But this one has me worried, even if the liver damage is minimal, my rheumy is afraid to put me on any meds.
    What am I going to do then? I can't live without meds, I am in so much pain already.
    Marla, the rheumy doesn't think, that the MTX has anything to do with my high liver enzymes. It is actually the lupus attacking the liver. It's a catch 22, you want to stop the lupus attacking the liver, but all the lupus meds, damage the liver even more. UGH
    I had 12 veils of blood drawn yesterday, felt like donating blood.
    My platelets have been low as well and the rheumy said, that is also the lupus doing it. Now my little mind is wondering, liver biopsy and low platelet count? That can't be good.
    I better stop now, before I work myself up.
    I am so glad, that I have you guys, because I don't go into deep details with my husband, he is worried sick, about me.
    No, I do not keep anything from him, but when I talk to him about it, I play it down a little, because I can see, how worried he is. There no sense in both of worrying until we know for sure.

    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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    Debbie,
    We're here for you when you need to vent. I haven't researched this, but there must be something that they can do if the biopsy shows that there is some damage. Are there some meds to slow down or stop the damage?
    Keep us informed!
    Hugs,
    Marla

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    Quote Originally Posted by magistramarla View Post
    Debbie,
    We're here for you when you need to vent. I haven't researched this, but there must be something that they can do if the biopsy shows that there is some damage. Are there some meds to slow down or stop the damage?
    Keep us informed!
    Hugs,
    Marla
    I think so, because the rheumy said that ones we find out what is going on with the liver, we can go ahead and treat it.
    Hopefully I hear something early next week, but you know how it is, when you wait for your doctor to call, but I am not shy, I'll call him until I get an answer.
    He is supposed to contact the gastro doctor.
    We'll see.

    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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    The nurse from the rheumy office called today, with the lab results.
    The only thing I know for sure is, that the sjogrens test was positiv, the rest was blah, blah, I just couldn't understand or comprehent the rest. But there was alot revealed at that last blood test.
    My question now is, if they can test for sjogrens in your blood, why do they have to do the lip biopsy? My rheumy will not do the lip biopsy, because the blood tested positive.

    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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    Debbie,
    I think that the lip biopsy is considered more definitive for Sjogren's. I had positive blood work for SJS at my very first rheumy appointment years ago, but that guy just dismissed it and said that it really wasn't a disease that needed to be treated. I know that I was positive for both SSA and SSB when my second rheumy tested and she listened and started treating me. The rheumy that I have now seems to want to dismiss it, too. She seems to think that it's nothing but dry eyes and dry mouth and easily treatable - Hah!
    I had the biopsy and the full work-up at UCSF because I volunteered to be part of their study. IMO, it gave me some more good information to take back to Dr. Pineda when I go back to Texas. I'm anxious for the re-test at UCSF, since it will soon be two years. At that time, I was taking both Plaquenil and MTX, and I didn't get the message to NOT use my eyedrops or take my meds for 24 hours prior to the test. This time, I,m no longer taking MTX and I'll know to not take my meds before the appointment. I'm wondering if more inflammation will show up? They send the info to my current rheumy as well as to me, so perhaps it will wake her up!
    If you have a more caring and informed rheumy than mine, who is willing to start treating the SJS, you should be fine without the lip biopsy.
    Hugs,
    Marla

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    Hi Marla,

    Thankfully, I do have a good rheumy and he will treat it, if the OTC meds are not helping.
    I have got an appointment for the gastro doctor, where he will give me a date for the liver biopsy.
    Like I said the nurse called with the blood test results, but I didn't understand, so I called her back and she said she would send the results in the mail. That rheumy and his staff is awesome, this doctor spends 45 minutes with me, every time I am there.

    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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