Can a person really live a long time with Lupus?

Question

I have Lupus. I just found out recently. I have the (SLE) Lupus.
Is there anyone here that has lived a long time with it? What things have happened to you? How are your flare ups?

Answer 1

I have lupus. doctors told me if I take my meds. and get my treatment,I could live for a long time.But remember you got to take care of yourself,eat right and go to your dr. appointments I was told that someone with lupus could live up to 10 years.So I had made up my mind that what happens to me happens.I wasn't seeing the doctor's, taking the meds or nothing.Then I got real bad off. Broke down and went to the doctor.He told me that I could live a long life with lupus but If I let it go and not do as I'm suppose to That I would die.I,m in bad shape now but alot of people with lupus are doing real good.I have bad flare-ups. I hurt, my body hurts so bad cause of the arthritis.My body swells all the time. I get sick alot like having the flu. my weight fell off of me .I lost30 pounds so fast. but my prayers are with you.

Answer 2

I also have SLE, and was officially diagnosed five years ago. I am 29, but looking back I was sick for several years before they diagnosed me (Dr.'s originally thought it was MS). Pay very close attention to your body. Eventually you will be able to recognize when you are about to flare up. I usually have them every few months. My Lupus affects my heart and lungs and also my blood. I have had a small stroke, but recovered 100 percent. Most of the times I am hospitalized it is due to dehydration or electrolyte imbalances, blood clotting or infection, or sever anemia. On a day to day basis you would never know i am sick just by looking at me, which is usually the case with most lupus patients. Daily my battle is with fevers (low grade, usually last all day) and fatigue. I think the fatigue is the worst part to deal with because it interferes with daily living, no matter how much stuff you need to do you are literally exhausted and just want to sleep. I hope this doesnt discourage you. My advice is just become as knowledgeable about the disease as you can so that you understand what is happening inside your body.

Most importantly take the best possible care of your body that you can..Although Lupus can sometimes be fatal, that is not very common, most people live normal lifespans. You can check out the statistics on the Lupus foundation website. Also, look on their website for a support group near you. They usually meet once a month. It was the best thing I did for myself. You will meet all types of people and see that no two Lupus cases are alike. Surrond yourself with positive people and a good support group!

If you have any questions, feel free to email me!

Take care ;)

Answer 3

At present, there is no cure for lupus. However, lupus can be effectively treated with drugs, and most people with the disease can lead active, healthy lives. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission. Understanding how to prevent flares and how to treat them when they do occur helps people with lupus maintain better health. Intense research is underway, and scientists funded by the NIH are continuing to make great strides in understanding the disease, which may ultimately lead to a cure.

Despite the symptoms of lupus and the potential side-effects of treatment, people with lupus can maintain a high quality of life overall. One key to managing lupus is to understand the disease and its impact. Learning to recognize the warning signs of a flare can help the patient take steps to ward it off or reduce its intensity. Many people with lupus experience increased fatigue, pain, a rash, fever, abdominal discomfort, headache, or dizziness just before a flare. Developing strategies to prevent flares can also be helpful, such as learning to recognize your warning signals and maintaining good communication with your doctor.

It is also important for people with lupus to receive regular health care, instead of seeking help only when symptoms worsen. Results from a medical exam and laboratory work on a regular basis allows the doctor to note any changes and to identify and treat flares early. The treatment plan, which is tailored to the individual's specific needs and circumstances, can be adjusted accordingly. If new symptoms are identified early, treatments may be more effective. Other concerns also can be addressed at regular checkups. The doctor can provide guidance about such issues as the use of sunscreens, stress reduction, and the importance of structured exercise and rest, as well as birth control and family planning. Because people with lupus can be more susceptible to infections, the doctor may recommend yearly influenza vaccinations or pneumococcal vaccinations for some patients.

I have been diagnosed since 2002 but probably had this since i was a kid - looking back...so that would make that 20 years. I have had a lot of problems. I also have APS. The clotting side to the Lupus. That has actually given me more problems than the Lupus. My flares just make me hurt and really tired - well, my hair kinda starts falling out too. My latest Lupus related stuff is the Autoimmune Scleritis.

With proper treatment, taking care of yourself, getting plenty of rest, exercising, etc. Really you should do ok. Really. Be vigilant, keep a record of your symptoms to find your patterns. Educate your self and get into a support group!

Good Luck and buy some sun screen!

Answer 4

My Aunt has lived with Lupus for over 20 years now. She does does gets flare ups and has been hospitalised a few times with very bad chest infections. On the whole she manages her condition very well and is able to lead a normal active life. If you look on the internet you will find many self help groups for Lupus sufferers and thier families. I wish you well.

Answer 5

I have had Lupus since November 2004. I missed about half of my senior year in high school including my prom and graduation. So far, I had to undergo hip replacement surgery for my right hip last year. Prednisone was the reason why I had to do the surgery. I developed an infection and it killed the head of my femur. I was in a walker for a year before I proceeded with the hip replacement surgery because of my insurance. My life is better now. I haven't had any flare ups but be careful with stress. Stress isn't good for us Lupies. Take one day at a time and relax.

Good luck with everything!