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  • lupus and survival rates

    hey everyone!

    i hope i'm not alarming anyone with my question, but i have to ask. . . this is something i have never understood since my diagnosis. i'm not worried about dying, i just like to understand and be informed.

    i see all the time: lupus patients, 90% survival rate of 5 years after diagnosis, 80% survival rate of 10 years after diagnosis. so, what after that? does the survival rate decline each 5 years?! thanks in advance to anyone who took the time to read and respond!

  • #2
    sorry i dont have a clue, never think about it, im still here . think its much better now than it was yrs ago....... sorry cannot help

    Lin x

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    • #3
      Originally posted by lin View Post
      sorry i dont have a clue, never think about it, im still here . think its much better now than it was yrs ago....... sorry cannot help

      Lin x
      oh, that's ok lin. i just didn't understand what that meant after reading it so often. thanks 4 responding! i hate 2 admit that i actually do think about it from time to time.

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      • #4
        The problem with Lupus is not dying. The problem is living.
        Too often as the body continues to attack itself one can become so far down that the soles of one's boots look like up.
        Half the battle is emotional/spiritual.
        The other half is luck.
        Hang in there! With some help and self-discipline and a few other things (including interests in life), life can be worhtwhile even with Lupus.
        Douglas+

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        • #5
          I think it would depend on how Lupus affects you. Organ involvement would make a difference. How a person responds to medication would also. Then there would also be the normal factors of taking care of yourself with diet, exercise, listening to the body. A good doctor factors in also. Personally I think those statistics may get even better with some of the newer medications being used.

          Take care,
          Lazylegs

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          • #6
            In the US and other similar countries, the survival rates are much higher than what you've been reading. I believe it's around 95-98% 5 year survival and 90% 10 year survival. Survival rates are very different for different countries, possibly due to treatment differences and diagnosing pattern differences {for example only diagnosing SLE if there is kidney involvement or DsDNA antibodies}

            If you think about it... a survival rate for even a group of healthy people will go down every 5 years... you can think of it as the % still alive and a certain percentage of people will die during every time interval for any of a number of different reasons.

            For people with lupus, serious kidney involvement is one of the things that leads to a lower survival rate. Women have better survival rates than men (in general as well as particularly comparing men and women with lupus). CNS involvement also tends to lower survival rates, and a younger age at diagnosis will also lead to a lower survival rate. {NOTE: a young age at diagnosis often means dx before age 45 in some studies}

            The main thing to remember is that an overwhelming majority of lupus patients these days should expect to reach the average life expectancy in their country.

            Hope this helps!

            Comment


            • #7
              Originally posted by Maia View Post
              In the US and other similar countries, the survival rates are much higher than what you've been reading. I believe it's around 95-98% 5 year survival and 90% 10 year survival. Survival rates are very different for different countries, possibly due to treatment differences and diagnosing pattern differences {for example only diagnosing SLE if there is kidney involvement or DsDNA antibodies}

              If you think about it... a survival rate for even a group of healthy people will go down every 5 years... you can think of it as the % still alive and a certain percentage of people will die during every time interval for any of a number of different reasons.

              For people with lupus, serious kidney involvement is one of the things that leads to a lower survival rate. Women have better survival rates than men (in general as well as particularly comparing men and women with lupus). CNS involvement also tends to lower survival rates, and a younger age at diagnosis will also lead to a lower survival rate. {NOTE: a young age at diagnosis often means dx before age 45 in some studies}

              The main thing to remember is that an overwhelming majority of lupus patients these days should expect to reach the average life expectancy in their country.

              Hope this helps!
              it does! thx maia! thx everyone else. lol. i wasn't asking how to live longer or how to live with this. i'm doing pretty well in that area. i was only asking about the whole survival rate stats. thx again!

              i wanted to also share something w/everyone. i was kinda hesitant thinking i might jinx myself speaking too quickly. i've been reading aboud candida and yeast and white poisons (sugar and flour) and how all of this affects us, those living w/lupus. anyway, i cut out sugar a long time ago and i could tell the difference. anyx i ate sweets or beverages w/sugar, i felt flu like (malaise). i kept putting off going to a holistic doctor because i knew deep down i did NOT want to make extreme dietary changes. i hate veggies (except corn, green beans, and greens, those are OK) and i don't like fruit. the thought of no pizza, bagels, subway subs (lol!), and anything w/flour was depressing. i count calories, never eat more than 1100, and have a healthy bmi. BUT, i knew deep down that eliminating the flour would make me FEEL better, not just LOOK better.

              so, guess what guys. . . tuesday was my last day of feeling like crap, literally. i have disc narrowing now so my back just hurt all day in addition to joint aches and muscle aches from fibro. i stopped eating anything w/flour monday and have felt amazing since wednesday! oh, i cut out my morning iced coffee w/sugar free vanilla and sugar substitutes. i felt bad tuesday but i'm sure that's because a lot of the poison was still in my body. my energy level is consistently high, just like it was before i was first diagnosed in '05. i have very minor aches (nothing to even complain about). i truly believe in the theory about candida and white poisons. so, just wanted to share. i feel like a moron for basically causing myself so much pain all this time. i'm realistic, i know i definitely might continue to experience issues. i don't know if my platelet count will increase. but, feeling good since wednesday (2 full days), is amazing. i haven't even taken motrin (for the disc narrowing) or flexerill and neurontin (for fibro) since tuesday. i plan on taking it a step further and eliminating processed foods (like the chicken i still have w/my subway salad) and preservatives. also, i plan on adding veggies and fruit to my diet. it makes sense that it helped tremendously. we are what we eat, right? it's still irritating to me that i can't have that pizza every now and then like my husband can but i think i'm starting to understand that my body isn't like his. unfortunately, foods that are toxic to me aren't to him. try it. what've you got to lose?

              Comment


              • #8
                "No...they don't do a study past 10 years! Most of these studies only covered a 10 year period (like 1990 to 2000). So, they take the survival rate (and it is the mean survival rate) of that 10 year period and express it in percentages.

                There are very few studies that have been done over a 20, 25, or 30 year period, therefore, there are no numbers for that span of time.
                So remember that the survival rate is based solely upon the period of years that the study was conducted."

                this is a response i received from a member @ another site.

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                • #9
                  Hello Well I (and others) are still around after nearly 30 years of this! I admit I have deteriorated over time, most spectacularly in the last nine or ten years but am still very much here!

                  Well Done with the diet changes. I must overhaul mine a bit but don't have the dedication to go as far as you have.
                  x Lola

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                  • #10
                    Everyone's already give you good answers. My job actually involves the assessment of life expectancy depending on a person's health (cheery stuff eh :rotfl so I can give you a bit of info....but this is from an insurance perspective, and so takes a cautious/pessimistic view point.:sad:

                    If a person is symptomfree (or nearly), and is controlled and stable on drugs - and if on steroids these don't exceed about 7.5mg per day - then an insurer will look to add a moderate extra premium. This would equate to deducting about 6 years from your life expectancy, which is really small. So if at 40 we say that a female is expected to live until they are 80, we might think that a person with SLE as described above will only reach 74. I can't remember what the UK life expectancy is at present but it is around that ballpark figure.

                    If a person is in remission, with no treatment, then the life expectancy is the same as someone who does not have SLE - ie back to the average.

                    If a person is on higher steroids, or other drugs that can lead to serious complications, or if they have renal/CNS involvement and so on, then their life expectancy would be considered to be less, depending on the extent of the organ involvement/toxicity of the drugs.

                    I hope this doesn't sound too pessimistic. Like everyone else says, each person is different, and there aren't so many long term studies out there - although I would expect that there will be some emerging in the future which will show that survivial rates are much better these days.

                    Lynne

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                    • #11
                      Originally posted by LolaLola View Post
                      Hello Well I (and others) are still around after nearly 30 years of this! I admit I have deteriorated over time, most spectacularly in the last nine or ten years but am still very much here!

                      Well Done with the diet changes. I must overhaul mine a bit but don't have the dedication to go as far as you have.
                      x Lola
                      thx lola! i'm so sick of lupus and fibro and all the stuff that comes with it! i'm on my way 2 eliminating anything toxic from goin into my body. i refuse 2 keep taking pill after pill after pill. ya know?

                      Comment


                      • #12
                        Originally posted by MountainbikeLynne View Post
                        Everyone's already give you good answers. My job actually involves the assessment of life expectancy depending on a person's health (cheery stuff eh :rotfl so I can give you a bit of info....but this is from an insurance perspective, and so takes a cautious/pessimistic view point.:sad:

                        If a person is symptomfree (or nearly), and is controlled and stable on drugs - and if on steroids these don't exceed about 7.5mg per day - then an insurer will look to add a moderate extra premium. This would equate to deducting about 6 years from your life expectancy, which is really small. So if at 40 we say that a female is expected to live until they are 80, we might think that a person with SLE as described above will only reach 74. I can't remember what the UK life expectancy is at present but it is around that ballpark figure.

                        If a person is in remission, with no treatment, then the life expectancy is the same as someone who does not have SLE - ie back to the average.

                        If a person is on higher steroids, or other drugs that can lead to serious complications, or if they have renal/CNS involvement and so on, then their life expectancy would be considered to be less, depending on the extent of the organ involvement/toxicity of the drugs.

                        I hope this doesn't sound too pessimistic. Like everyone else says, each person is different, and there aren't so many long term studies out there - although I would expect that there will be some emerging in the future which will show that survivial rates are much better these days.

                        Lynne
                        thanks lynne! i don't think it sounds pessimistic @ all. very realistic. thx a bunch 4 ur response! makes a lot of sense 2 me.

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                        • #13
                          Hello I'm new to this site and was interested to read the young womans concerns about life expectancy. I was diagnose with wengeners granmulmotosis in 2004 which has left me with chronic kidney disease which at my last check has remained stable However, after going into remission for about a year after treatment in Jan 2008 I started to feel unwell my face was swollen and I felt out of sorts the consultant coudn't find anything wrong with the blood test and kidney function was fine so for months I dragged myself to work until my back gave out in a clients home and the elderly person had to help me get up and out of her home (poor soul).
                          Anyway to cut a long story short, My husband thought that a holiday would do me good and we wen off to Jamaica for a few weeks needless to say I felt worse I was tired all the time my joints ached and ijust felt like death literally I felt like i was having out of body experiences,
                          I visited a lovey Dr in Jamaica Emma Gayle an english dr practicing in JA, she advised that I insist on seeing a rhumatologist when I got home as renal consultants can miss things, This i did but it took another 6 months and my knee to swell as big as a football and ERS to go trough the roof,my face was swollen I couldn't recognise myself
                          It then took until August 2009 for me to be diagnosed with Lupus s well as the vasculitis I am appalled at my diagnosis and if i hadn't doctored the blood test form out of curousity maybe i still wouldn't be diagnosed. I have lost faith in the system but know that i need to stick with it. So back to life expectancy who knows would be my response take each day as it come life is sweet to all of us and when we are unwell we tend to dwell on mobidity its a form of depression try talk to positive people
                          I lost my sister in law last Oct' to cancer of the stomach she was 38 years old with three young children who knows when our time is up. (Live each day inhale exhale ).


                          Mille

                          Comment


                          • #14
                            Hi Jayleigh

                            It sound like you are doing the very best you can to enhance your life and the outcome for your health.

                            Like you, I've found that eating a low sugar / carbohydrate diet works on a number of levels. It avoids the unpleasant experience of blood sugar highs and lows - which ultimately just make me feel weary - and the weight gain often experienced on prednisone.

                            Avoidance of glutton is also important for me - it causes me bloating and more ..... Glutton intolerance appears to be a common experience of those with autoimmune conditions and, indeed, my uncle has celiacs disease.

                            Keep up the good work!

                            Merle

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                            • #15
                              Thank you, Lynne. Good information.
                              Douglas+

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