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Thread: I have the opposite of everyone elses problems

  1. #1
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    Default I have the opposite of everyone elses problems

    So while so many people come on here and their rheum wont say they have lupus because the blood doesnt show them and they don't listen to their very obvious symptoms, I right now have no obvious symptoms but have had elevated muscle enzymes for about 4 months and the first time my rheum said its because you weren't taking your cellcept right, which I wasn't. She ran blood a few weeks ago while I was there and finally got a call today saying she doesnt want you going down on the medrol still because your muscle enzymes are still high and keep taking your cellcept. So Im aggravated and tell my mom and she's like its probably because your still not taking your meds and I screamed at her because they didn't say that just said my muscles were inflammed. But they don't feel inflammed. Usually I'd be complaining like no other about it because usually when this happens I hurt everywhere and can't brush my hair or stand in the shower or all this crazy stuff and while I do feel a little more run down than usual I feel fine. I don't understand =( I feel like my bodies planning a stealth attack on me and suddenly everythings going to get bad. Sorry if none of this made sense, my head hurts really bad.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Hey Ritz, my muscle enzymes are always elevated, despite being on prednisone, Imuran, plaquinil and an experimental lupus drug. It seems like whenever I think my labs are going to be worse, they are better and when I think they should be better, they are worse. I wonder if all the walking you are doing these days is elevating your labs. My previous rhuemy told me that an increase in activity can do that, even though getting the extra exercise is a good thing.

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    Well I wish they'd just look normal so I could go down to 2mg on the medrol because after that IM OFF. I don't want to have them in my system anymore. And now Im kind of worried this shows Im going to end up in a flare soon. And if so, that would mean my meds Im on now aren't working. She said if that happened we'd have to start on chemo drugs =( new level of stress added to this already stressful week.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    ritz,
    with me, my lupus is going very well...... with my medication.

    my fibro is getting worse.
    i have increased some of my fibro meds because of it.
    my enzymes are also inflated.

    my rhuemy suggested that the inflamation from fibro can sometimes be less painful, because it is caused by dryness of the joints, while inflamation from lupus is caused by excess fluid in the joints.
    the opposites can counter balance each other. the blood results are raised, the desease is out of control...... but the pain does not always follow suit.

    other times when the inflamation is from one only... (fibro or lupus) .... then the pain can be higher, with lower blood results.....
    because there is no other ailment to cancell out.

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    Gizmo (10-21-2011), tgal (10-21-2011)

  7. #5
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    Guys I have been so tired and so busy Im doing bad in school which is in turn stressing me more and making me feel worse. I want to go find a nice hole and stay there for a few weeks.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Ritz, I'm going to go back to a question I asked a while ago - can you go to college part-time? If you have to work to pay for college, it seems like you could be headed for trouble. Will you lose your financial aid if you aren't going FT? At the university my daughter tried, 9 credit hours was considered FT for disabled students. Work and school is hard for healthy people to manage. My suggestion is that you go talk to Disabled Student Services ASAP if you think you are getting in trouble with your grades. See what they can do to help before the situation is salvageable.

    As for chemo drugs, I think Cellcept would already fall into that category. Some people tolerate Imuran and methotrexate very well - my daughter and I are among them. Zero side effects for either of us. My daughter injects her methotrexate so it doesn't bother her stomach. I know the meds are an issue for you, but maybe with the college carrot dangling in front of you, they won't seem quite as "hard to swallow." LOL Were you honest with your rheumy about how tired you are, or did you gloss things over so you wouldn't have to increase your meds? I know this totally sucks, Ritz, but these are the cards you were dealt. It's up to you how you play them.

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    I have to be taking 12 hours to be full time and get my financial aid money. I kind of just want to sleep for a week. My familys mad at me because I screamed at them all the other day, me and my boyfriend broke up last week, and all my friends are busy between school and work so I've pretty much been trying to figure crap out on my own and I really haven't been feeling good. I don't want anyone to know I've been feeling even slightly like crap so I've just told them I'm tired which is definately true. My rheum said cellcept isn't chemo, its like a step bellow. Next step, chemo. Don't want that kind of just going to refuse it unless I can't function. I've been trying to be really good with my meds and I think for the most part I have been. This time of year just really sucks for me. I have been having a terrible day on top of everything else. One of those days you wish you'd just stayed in bed because then you wouldn't have found out you failed a math quiz, probably wouldn't have broken some drive on your laptop, or spilled pizza on your new boots the very first time you wore them. I seriously couldn't even concentrate in any classes today and just wanted to take a nap and almost started crying out of nowhere like I keep doing a lot lately, but not at school because I dont need to be sick and actually LOOK crazy. I feel like my hormones are all out of wack on top of everything else, and I feel like anyone who's talked to me for more than 5 min in the past month would agree. I FEEL crazy. Sorry thats my rant for awhile, I'll try to limit myself to one a week lol ugh =(
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    some days we have a good run..........
    others are just ####

    there is always tommorrow,
    so just survive today, and live for tommorrow.

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  13. #9
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    Ritz, I think it's worth a shot to see if you can take fewer credit hours and keep your financial aid because of your illness. At least talk to someone before you rule it out, please.

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    steve.b (10-24-2011)

  15. #10
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    I actually have an advising appointment today she's probably going to tell me I'm insane.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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