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Thread: Does it get better or worse from here?

  1. #1
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    Default Does it get better or worse from here?

    I'm 37 and was diagnosed about four months ago. I have started Plaquenil but not noticed any obvious changes yet.

    In a way I'm glad I found this forum, but unfortunately reading here is making me feel more depressed. It sounds like people are having a really bad time -- barely able to walk, having to quit their job, barely able to dress themselves ... it sounds very debilitating.

    Is this what I have to look forward to until I die? Don't the medicines help at all? Will things just continue to get worse and worse for me over the years?

    Also, I have asked this in different places and never seem to get an answer, but what is remission? How long does it last? Does it mean you feel perfectly normal, or just a little better? And what can you do to try to achieve it?

    Jenny

  2. #2
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    Default

    I'm pretty new at this, too, Redhead - about 10 months. Plaquenil can take up to 6 months to really have full affect. It can really help fatigue and joint pain.

    I'm sorry some of the posts here are scary for you - I know just what you mean. I had the same reaction at first. But as I continued to read I also found that some have had long periods of remission and many have just a few lupus symptoms and live pretty normal lives for the most part. I don't have the severe joint pain; I don't have any major organ involvement. I have pericarditis, malar rash, neuropathy in my leg, some photosensitivity and fatigue. BUT, I still do most of what I used to do - just less of it and a bit slower. I did have to quit my full time job and take one part time. I am still hopeful of a remission, and am working with the doctors to find a way to get there. Please don't lose hope yet, Redhead. You need to fight the good fight - many, many people live full lives with this disease. I belong to a support group in my area, and there are women in the group who have had lupus for 30 years - and have worked, had families, traveled and done many things like everyone else. Hang in there! Please check in often for support. And, use websites like the Lupus Foundation of America (www.lupus.org) to find good reading materials and information that will help you manage your disease.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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