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Thread: Here we go again.

  1. #1
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    Default Here we go again.

    The rheumy nurse just called, my liver enzymes are sky high again. This means that I have to stop the MTX again , but this time for good.
    It was my 5th try with the MTX, every time I had to stop, because of high liver enzymes. The last time I started in May, had a blood test done once a month and every time the numbers went up, but this time the numbers trippled, they are at 297.
    Not knowing the result yesterday, I took my weekly shot last night, wish they would have called yesterday.
    This is the end for me and MTX, the only med that helps me.
    I was diagnosed with autoimmune hepatitis last year, so my liver is already compromised and can't take much more.
    What am I going to do?
    I just started to feel a little better, less pain. Now it is going to start all over again.
    The only thing I can look foreward to now, is more pain. I could cry, scream and have a tantrum right now.

    Debbie
    Last edited by debbie-b; 09-17-2013 at 04:03 PM.
    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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    Im so sorry Debbie, this Lupus thing is so unfair, we need new meds, and definitely new training for doctors to deal with us. Im so sorry {{{HUGS}}}
    Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"

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    debbie-b (09-17-2013)

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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    I wish I could reach through here and hug you! I am so sorry! I know I am not posting as much because of things in my life but if you need me just PM. I will always bet here for you
    Mari

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

    ~Winston Churchill~







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    I'm so sorry, Debbie. You must feel pretty discouraged. I know I would.

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    Breathe deep... I don't think I've responded in time to tell you not to throw a fit. I know my Sjogren's always acts up more when I get emotionally upset. Yes, this sucks... Yes you should be mad, demand other options from your medical professionals. Force them to think out of the box. It's time to be you're own advocate right now, and I know first hand they don't listen to emotional people, or that has been my experience. When I was undiagnosed for 7 years what I told myself is I only wanted to know what I'm dealing with... Because at least then I will have an action plan, even if the action plan is - this is my lot in life and I'll just have to live with it. It's time to formulate a new plan. I'm a "fixer" can you tell? I can't fix this for you, I was sure hoping you'd have been able to handle the MTX longer than this. I am sorry for your bad news, and I hope you have a good and competent team of doctors surrounding you. I wish you more good days than bad.

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    I am sorry to hear that you must stop the MTX permanently. Especially as it was working for you. Perhaps you can discuss some alternatives with your doctor. Others, who are not able to take MTX, have had some success with the following alternatives:
    Cyclosporine, Azathioprine, Cyclophosphamide, and Minocycline.

    Please let us know what you and your doctors decide. I am sending you cyber hugs filled with understanding.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Abbyrition (09-18-2013)

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    hoping you can find an alternative !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    Quote Originally Posted by tgal View Post
    I wish I could reach through here and hug you! I am so sorry! I know I am not posting as much because of things in my life but if you need me just PM. I will always bet here for you
    Thank you, Mari.

    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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    Quote Originally Posted by BonusMom View Post
    I'm so sorry, Debbie. You must feel pretty discouraged. I know I would.
    Thank you. I am very discouraged, almost hopeless.

    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).

  12. #10
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    Quote Originally Posted by Abbyrition View Post
    Breathe deep... I don't think I've responded in time to tell you not to throw a fit. I know my Sjogren's always acts up more when I get emotionally upset. Yes, this sucks... Yes you should be mad, demand other options from your medical professionals. Force them to think out of the box. It's time to be you're own advocate right now, and I know first hand they don't listen to emotional people, or that has been my experience. When I was undiagnosed for 7 years what I told myself is I only wanted to know what I'm dealing with... Because at least then I will have an action plan, even if the action plan is - this is my lot in life and I'll just have to live with it. It's time to formulate a new plan. I'm a "fixer" can you tell? I can't fix this for you, I was sure hoping you'd have been able to handle the MTX longer than this. I am sorry for your bad news, and I hope you have a good and competent team of doctors surrounding you. I wish you more good days than bad.
    Thank you too.
    I am fortunate enough to have a great Rheumy. He is always impressed, how willing I am to try something else. But this is pretty much it though, when your liver is damaged, there aren't to many meds you can take, because almost all of them have a bad impact on the liver.
    It's a catch 22, the Lupus is attacking the liver, but I can't take the meds that will keep the Lupus under control.
    Very frustrating.

    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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