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Thread: Hopeless!!!!!!!!!!!!!!!!!!!!!!!!

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    Default Hopeless!!!!!!!!!!!!!!!!!!!!!!!!

    I hate to whine again, but I am frustrated, scared, hopeless and mad, all at ones.
    Ten days ago my rheumies nurse called to tell me the results of my last blood test, I was at work so she left a message, to call her back. I called her back, got her voicemail and left a message to call me back. We kept missing each othres phone calls for ten days, I would call her back, her voice mail came on, i woulleave her a message, and so on. Last wednesday I called her at 8 am and told her, that I would be home all day and to please call me. Of course, she didn't call on wednesday, when I was home, but she called on thursday, when I was at work and her message said, " we really need to talk to you, it is very important, we have to discuss your last blood test results".
    So now I am scared out of my mind. This morning I called her from my cell phone at work( we can't have our cell phones at work) and gave her heck on her voice mail, she finally called back and told me that my liver enzymes have gone up from 40 to 190. I have to stop MTX for ever and I am not suppose to take any NSAIDS.
    How in the world does he think, I can live without taking anything. I am suppose to go back to the liver doctor, but he doesn't do anything, I have been to him.
    She also said to stop taking Calcium, because my calcium is way to high. I DON'T TAKE ANY CALCIUM. Does anybody know why the calcium would be very high? I drink a glass of milk once in a while, cheese and other milk products the same, once in a while.
    What am I going to do? No meds, now what? I feel helpless.

    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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    What a runaround! That is ridiculous...

    The first thing I would do is make an appointment to talk to the Rheum...this is a HUGE bunch of very concerning news, and a SIGNIFICANT change in treatment - it's ridiculous that they didn't simply schedule you for an appointment.

    Also, be sure to ask them to double-check the blood work, and maybe even have it repeated. My dad ended up enduring an unnecessary and invasive heart procedure because they mixed his name up with another patient who had a similar name - their blood work got switched!

    At the very least, your Rheum should talk to you and answer your questions, and give you some kind of PLAN instead of just saying "stop taking everything". Even if you DO have to stop taking Mtx, there are alternatives! Leaving the lupus untreated doesn't sound right at all. And what do those numbers mean for your liver? What should you be doing to prevent damage, or help it heal? (at the very least, I'd be drinking a lot of water!). And what does the calcium level mean? What's going on?

    This may be a case where you have to be a really strong advocate for yourself and DEMAND some time to get your questions answered.

    I am so sorry you're having to deal with this....honestly, it sounds like very unprofessional conduct on the part of the doctor's office.

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    Quote Originally Posted by SleepyInSeattle View Post
    What a runaround! That is ridiculous...

    The first thing I would do is make an appointment to talk to the Rheum...this is a HUGE bunch of very concerning news, and a SIGNIFICANT change in treatment - it's ridiculous that they didn't simply schedule you for an appointment.

    Also, be sure to ask them to double-check the blood work, and maybe even have it repeated. My dad ended up enduring an unnecessary and invasive heart procedure because they mixed his name up with another patient who had a similar name - their blood work got switched!

    At the very least, your Rheum should talk to you and answer your questions, and give you some kind of PLAN instead of just saying "stop taking everything". Even if you DO have to stop taking Mtx, there are alternatives! Leaving the lupus untreated doesn't sound right at all. And what do those numbers mean for your liver? What should you be doing to prevent damage, or help it heal? (at the very least, I'd be drinking a lot of water!). And what does the calcium level mean? What's going on?

    This may be a case where you have to be a really strong advocate for yourself and DEMAND some time to get your questions answered.

    I am so sorry you're having to deal with this....honestly, it sounds like very unprofessional conduct on the part of the doctor's office.
    Hi sleepy,

    You are right, after sitting here and letting it all sink in, I came to the same conclusion, I will make an appointment asap and talk to him myself.
    The thing is, like you said, how can he say, to stop all the meds and see the liver doctor. I went to the liver doctor last year for the same reason, he ordered a liver biopsy and found out, that I have moderate liver damage, from autoimmune hepatitis ( Lupus attacking the liver). He said there are no meds necessary for the liver, yet, and send me back to the rheumy. I will not go back to the liver doctor, it will just jack up my doctor bills and I don't get a result.
    I googled the high calcium and found the main reason in 99% of the cases is Primary hyper parathyriodism.
    Believe me, when I see him, I will tell him, that I don't agree with his methods. I was so mad, that I got the run around with the nurse calling and not calling back, it took 10 days to actually talk to her, that is not normal.

    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

    Definately schedule to see the rheumy as to this was kind of a kick in the teeth test result to drop on a patient over the phone after a ten day phone tag play.There are meds that are used for AI hep and also used in suppression of SLE.Imuran is one of them.Along with pred.If you have never taken Imuran it might prove to be an option.

    I fear that you will have to see the liver dr as if the inflammation is thought to be AI based but at 40 wasnt severe enough to treat then due to the # rise he might put more concern and focus on it now.I just wanted to say I hope your #'s go down once you stop the MTX and you can see the dr and get some answers soon.I would let him know that giving news like that over the phone is kind of scary and really not very appreciated especially along with the "stop all meds and there is your new treatment plan but have a great day speech"

    Get an appt,dont freak,ask about Imuran as a possible alternative-I did well on it for a while at the beginning of diagnosis until I got an allergy that was out of the blue.I am now on MTX.
    I wish you a peaceful weekend and luck and quick answers at the dr.
    SLE w/Sjogrens Overlap and Raynaud's diagnosed in 2007.Fibro in 2009.

    The Early Bird May Get The Worm But the Second Mouse Gets The Cheese.

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    Quote Originally Posted by ItsLupus2007 View Post
    Debbie

    Definately schedule to see the rheumy as to this was kind of a kick in the teeth test result to drop on a patient over the phone after a ten day phone tag play.There are meds that are used for AI hep and also used in suppression of SLE.Imuran is one of them.Along with pred.If you have never taken Imuran it might prove to be an option.

    I fear that you will have to see the liver dr as if the inflammation is thought to be AI based but at 40 wasnt severe enough to treat then due to the # rise he might put more concern and focus on it now.I just wanted to say I hope your #'s go down once you stop the MTX and you can see the dr and get some answers soon.I would let him know that giving news like that over the phone is kind of scary and really not very appreciated especially along with the "stop all meds and there is your new treatment plan but have a great day speech"

    Get an appt,dont freak,ask about Imuran as a possible alternative-I did well on it for a while at the beginning of diagnosis until I got an allergy that was out of the blue.I am now on MTX.
    I wish you a peaceful weekend and luck and quick answers at the dr.
    Thank you for your reply.

    Well, I am the one who told the rheumy a while back, that he can give me any info about tests etc, over the phone. I am ok with that, but I meant HE could call me, not the nurse, who can't answer any of my questions.
    Last time I saw him, he was talking about Enbrel, if I couldn't take MTX anymore. I checked Enbrel out on line and it is known for hurting the liver, causing major damage, in some cases. I feel, that this med would be tempting fate.
    I have had to stop MTX several times before and even without MTX, my Liver Enzymes were as high as 210. Even then, the liver doc, didn't think it was severe enough for treatment. He just said, we could do another liver biopsy in a year and see how much worse it has gotten. He seems to be all about making big money, a liver biopsy is very expensive.
    My rheumy just wants to cover his ( lets say, back) by sending me to the liver doc.
    Maybe I need to look for a new rheumy, who has bigger "g"uts.

    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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    There is a difference between giving info about tests over the phone and telling you that you have to change your entire protocol over the phone! That requires a new plan which requires explanation and a visit! I swear they are idiots sometimes!

    i would also like to add that if you don't like the liver doc you had before then this might be a good time to find another
    Mari

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

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    Quote Originally Posted by tgal View Post
    There is a difference between giving info about tests over the phone and telling you that you have to change your entire protocol over the phone! That requires a new plan which requires explanation and a visit! I swear they are idiots sometimes!

    i would also like to add that if you don't like the liver doc you had before then this might be a good time to find another
    I was thinking that too, but then the new one has to get my records, plus it will take a long time to get in with a new liver specialist. I can't be without any meds for that long.
    Monday I will call the rheumy, for a appointment, they usually get me in quickly. I'll go from 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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    As you've found debbie, the parathyroid is often implicated with elevated calcium levels. However, your lungs can also be the cause. Don't let them ignore the elevated calcium, or "poo-poo" it as a temporary thing. Make sure it's temporary, if that's what they say.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Quote Originally Posted by jmail View Post
    As you've found debbie, the parathyroid is often implicated with elevated calcium levels. However, your lungs can also be the cause. Don't let them ignore the elevated calcium, or "poo-poo" it as a temporary thing. Make sure it's temporary, if that's what they say.
    Thank you jmail,

    You are right, I have read that as well. That genius rheumy of mine just had his nurse call me and she said," Dr. " Denton" wants you to stop taking calcium supplements, because your calcium levels are high", my answer to her was, " I don't take any calcium", she " oh really?".
    Do you think I should go to my primary for the calcium thing?

    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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    I would go thru the rheumy and let him tell you where he wants you to proceed from his office.I wouldn't waste a copay at the PCP as they at this point are likely to tell you that the rheumy needs to be dealing with it to rule out if its SLE or autoimmune Hepatitis related.Plus he needs to tell you what plans he has regarding treatment.I like you have no issue getting labs results over the phone but if there are other issues to discuss or med changes this radical that include jumps that large that should have come from the Dr himself..not from a nurse who can just say "stop this,dont do that but cant provide any answers to further treatment plans or any answers to questions you might have had right off the top of your head.

    I would get in at the rheumy and ask if it is the MTX elevating the liver enzymes then when is the earliest that I can retest to see if being off the medication is allowing them to lower as if I am going to have to see the liver dr at least if it takes a month to get in if you can be tested weekly or bi-weekly until then you will have further proof of either a drop in enzymes proving that it might be med related,no drop or a rise which would indicate it was not the MTX but other issue going on.


    Be well
    SLE w/Sjogrens Overlap and Raynaud's diagnosed in 2007.Fibro in 2009.

    The Early Bird May Get The Worm But the Second Mouse Gets The Cheese.

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