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Thread: Hope for lupus patients or not?

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  1. #1
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    Talking Hope for lupus patients or not?

    Hi, I have been obviously diagnosed with SLE(so that's 5 years with this disease now), which is why I'm here. My doctor has cut my prednisone so much it's like I'm not even taking it anymore. He told me to take half a small pill every two days. I know this sounds bad but, I cut myself completely off from the prednisone. I have been going more than half a year without taking the pill. I have rarely gotten sick and, when I did, I never fully became sick. I got some sniffles but then I automatically get better. So, my immune system is functioning perfectly. When I went to the doctors and had my urine checked, everything was perfect. I am planning to tell my specialist on my next visit that I haven't been taking my meds.
    So, what do you guys think this means? Are my symptoms delaying? Am I cured? Thoughts?

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    Darktime,
    hi, I've only been diagnosed for a short time. But I've been dealing with this for years. I go for years without a major flare. I believe you can get remissions like with diseases.

    Hope is good. Faith and belief hold us steady.

    We can only go with the flow and see what happens.

    Nonna
    living Life to the best of my ability....
    Because you must...

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    Hi there -
    I know for me, my doctor wants me off the prednisone as soon as possible, as being on it long-term has alot of side effects. Each time Ive had to go on, the plan is to get to as LOW a dose possible or OFF it, while still keeping symtoms under control. Each flare where Ive been on it has been different - for example, some flares Ive only had to do a Medrol Pack, or taper, which lasts 10 days or so, until the symptoms are under control - and another time I was on 20mg for almost a year, fianlly tapering off (10 for a while, then 5 for a while, 2.5, then 0). So, I would think that your doc would be pleased you are able to be off it. It is VERY important though (Im not lecturing here, erally!) that we keep our docs informed about EVERYTHING were doing, particularly med changes, not only for the obviouse reasons, but also its important for them to keep record of how our flares progress each time, what meds worked and what didnt, etc. This helps them monitor your disease progress and can help them treat you in the future if you have another flare.
    As for being "cured", sadly there is no cure for lupus at this time. Its important to know, however, that this disease is SO unpredictable, and SO individualized that some patients may go into remission for a period of years, while another may have intense flares all the time. It sounds like your body went into a remission (YEAH!) and whether that happened on its own (lupus comes and goes when it wnats, sometimes with no explanation) or due to the prednisone - its hard to tell. But your doc really needs to know how long youve been off it, so he can make note of it. I would be very surprised if he put you back on it if your feeling well, but there may be tests results showing disease activity that you are not aware of.
    As for trying to maintain the wellness you feel right now, there are many things you can do to try and prevent flares such as staying out of the sun/UV rays, avoiding stress as much as possible, and taking care of yourself with rest, exercise,diet, etc. But remember, soemtimes we flare up DESPITE our best efforts, and seeing your doctor promptly for treatment is imperative. There are many "sticky" posts at the top opf the forum pages that give wonderful info on all of this stuff and maintaining wellness.

    I hope you remain feeling well, and please please tell your doc abuot the med changes so he can accurately monitor your disease. Take care and please keep us posted as to how your appt goes.
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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