I was diagnosed in 2014 with SLE. I was told it was in the early stages and treatment was started. However, every doc I have been to over the years thought I may have it and some even tested, which came back negative.
I have hardening of the Heart on the left side, and mild kidney damage. Both attributed to HBP. I have had many strange illnesses over the years and am highly sensitive to medications.
I have read where some of you have suffered Lupus for 20 years or more. From my readings and research, I find this surprising and encouraging. I felt I had been handed an early death sentence.
Having said all this, my question is What is the mortality rate of Lupus patients? When caught supposedly early stages, what is my future quality of life? Right now it stinks.
I am aware everyone is different and reacts differently to the disease, but I think you know where I am coming from with this. Insight please!
Hello Years ago it was very different from now. AnnA post in the blogs she is a great inspiration and was diagnosed many years ago. You can read her blogs.
I had read many horrible things when I was first told about my lupus when I went in for my 2nd appointment I asked my doctor He told me" take your meds eat right exercise eliminate as much stress as possible spend your time living not worring about what you caint change. Then he laughed and said the way people drive around here you stand a better chance of getting run over than dying of lupus"
I have had lupus for five years now, and I watch what I eat, stay active and overall I'm very healthy. Have had some scary flares in the past, high bp, seizures, really bad fatigue and severe swelling of joints. If i let myself get stressed too much, i can go downhill fairly quickly, but when I manage my condition, my quality of life is very good. i have three young,active and thriving boys to keep up with. i have battled all natural as well with accupuncture and holistic meds. It is definitely different for everyone, Lupus attacks the tissues of each patient differently, with that being said, twenty years ago lupus was a death sentence, now, over 1.5 million americans live with it daily. So, for the most part, you will always have an effect pon how dibilitatig this condition can be, I plan on being around active and happy for many many years to come. Hope this helped
I have had lupus since 1967- so 48 years Back when I was originally diagnosed it was a death sentence but the medical field has come a long way in knowing how to manage this disease Life expectancies with treatment as needed is now close to normal
Newbie, You’re right , everyone is different. The quality of Life is up to you, what you make of it .Feb.7th has/will be 4yrs., for me. And HAPPY 3say there is nothing that is going to take my Life . My advice for you keep doing what is good for you and hang in there with us to Fight LUPUS …Beverly L.
I was worried at first also, but Lupus is no longer a death sentence. As long as you watch what you eat and stay aware of what stresses you, then you can live a fairly normal life. The difficulty is learning/realizing that you can no longer do the strenuous things you used to do, it will cause flare ups. You have to learn to ask for help and not feel defeated when you do.
Life with Lupus is different, but not a death sentence. Your activities may be restricted because of your health, but with good medical care I’ve heard most people live about as long as the rest of the population.
I am 65 years old and my quality of life is good after almost 3 years on Plaquinil. I am exercising again and I feel like my old self. I am just one though. Seems like there are people who are a lot sicker than me. I was diagnosed in 2012
but I also had lots of weird things happening to my body over the years. I think I have had Lupus for a long time.
I agree with the posts above. I’ve been diagnosed for 2 yrs and misdiagnosed 2 yrs before that. I maintain with diet and exercise. I take no meds but trying vms along with PT massages. I have 2 young children and husband and can keep up much of time. I have active flares when I’m overly stressed or push myself so learning to relax. This is not a death sentence by any means. STAY ENCOURAGED!!!
well sweetie your quality of life is what you make it........as for the mortality rate for lupus people when i was diagnosed 21yrs ago, they gave the life expectancy of people when they are first diagnosed with lupus as 5yrs..well like i said that was 21yrs ago, they used to refer to lupus patients as terminal, wich they do not do anymore.....lupus is NOT a death sentence and it is just like the phrase for AA .....TAKE IT ONE DAY AT A TIME.........you have good days and bad days....try to make the most out of the good days........so i pray you become pain free......and god bless you and yours dear......purrs..catspaw1955
I have had lupus since 1967- so 48 years Back when I was originally diagnosed it was a death sentence but the medical field has come a long way in knowing how to manage this disease Life expectancies with treatment as needed is now close to normal
Welcome PoohP I was diagnosed last March 2014 and since I started my treatment have been doing very well until now have had a few issues but pain free for the most part. Like you I would read so much about the life expectancy with this illness that it would only bring me down and scare me since I have a 14 year old and a 2 year old. All I could think of was not seeing my boys grow up and leaving my wonderful husband alone with them. My hubby is amazingly strong and supportive and I love him to death but I know as strong as he is it gets to him as well. Like all these wonderful people have told you there is no set life expectancy for us anymore everyone’s is different and it all depends on how well you take care of yourself. And when your feeling down or stressed you can always come here and vent or ask any questions everyone is so nice and willing to help here. Best of luck and God bless
it is just accepted as a auto immune disease now, when i was diagnosed 20yrs ago lupus was considered terminaal with only 5yrs left when you were diiagnosed......well as i said tha was 20yrs ago.......lupus is not terminal, it can affect any organ thougoh that can make it life threatening, so just keep seeing your doctor regularly and you can live a normal life span......as for quality of life , you have to try and just enjoy the good days......and live through the bad days....god bless you.......purrs..catspaw1955
Ive had it since i was four. Im 24 now. It seems low stress and eating right moderate excersise does wonders. Prayers heal great but u have to have people keep praying for u the second u feel pain ask someone to pray for u. When i prayed alone it didnt work as well! Keep strong and your perfect the way u are!
I'm just a maybe lupus person who does have fibro. My advice is to take hold of everyday and enjoy it as much as you can because it beats the mourning that you might want to do otherwise. In other words, choosing to be happy feels much better than feeling stressed and upset. Also, people who are all stressed out oftentimes don't live to a ripe old age, so not being freaked out about having lupus is probably the best thing you can do for your body and health.