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377 Posts
Stacy,
I had a long remission that lasted about 6.5 years. I was on no medication during that time frame. I know I read recently in The Lupus Book that long remissions do not usually happen in patients with internal organ involvement. I don't have internal organ involvement from my lupus and at the time of my remission my Scleroderma hadn't really started yet.
Different doctors do tend to have different meanings when they say remission. My first rheumatologist used to use the term all the time and all it would mean is that for a 2-4 week period my disease process was stable.
I remember when I first joined this site about 5 years ago, which was a couple months after I came out of remission, someone told me that people who come out of long term remission tend to get much sicker than they were before. I have never found anything to back up that statement except the fact that I am much worse off this time around.
I don't think about going into another remission, partially because it is very unlikely. I haven't looked up statistics recently but I think I remember seeing that less than 5% of all lupus patients will go into remission. I try and focus on the good I can find in today rather than expecting a remission. This disease isn't fun to live with but inspite of all my pain and other issues I still live a fulfilling life. A changed life but it is still good. My life is not what it was before at all and letting go of some dreams made room for new ones.
There is a good book called New Hope for People with Lupus by Theresa Foy DiGeronimo that used to be available from Amazon and probably still is. It is a good book for newly diagnosed patients. We need to learn to live our Lupus rather than always fighting it.
Take care,
Karen
I had a long remission that lasted about 6.5 years. I was on no medication during that time frame. I know I read recently in The Lupus Book that long remissions do not usually happen in patients with internal organ involvement. I don't have internal organ involvement from my lupus and at the time of my remission my Scleroderma hadn't really started yet.
Different doctors do tend to have different meanings when they say remission. My first rheumatologist used to use the term all the time and all it would mean is that for a 2-4 week period my disease process was stable.
I remember when I first joined this site about 5 years ago, which was a couple months after I came out of remission, someone told me that people who come out of long term remission tend to get much sicker than they were before. I have never found anything to back up that statement except the fact that I am much worse off this time around.
I don't think about going into another remission, partially because it is very unlikely. I haven't looked up statistics recently but I think I remember seeing that less than 5% of all lupus patients will go into remission. I try and focus on the good I can find in today rather than expecting a remission. This disease isn't fun to live with but inspite of all my pain and other issues I still live a fulfilling life. A changed life but it is still good. My life is not what it was before at all and letting go of some dreams made room for new ones.
There is a good book called New Hope for People with Lupus by Theresa Foy DiGeronimo that used to be available from Amazon and probably still is. It is a good book for newly diagnosed patients. We need to learn to live our Lupus rather than always fighting it.
Take care,
Karen
