Anyone have Lupus?

[DaisynDonald]

My Dr. told me I may have Lupus, I have no clue what this is. Can anyone who has it help me understand more about it? Thanks

 

[DeborahKlein]

Hi DaisynDonald!

I have it. My mother has it also.
From the Lupus Foundation of America site:
www.lupus.org -
What is lupus?

Lupus is a widespread and chronic (lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, or skin.
The immune system normally protects the body against viruses, bacteria, and other foreign materials. In an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissue. The immune system then makes antibodies directed against "self."

That doesn't sound good, but it is actually a matter of what type you have and how healthy you can keep yourself with or without medications. Generally I have only had issues when I've gotten sick - I need to not "ignore it and hope it goes away". To the doctor I go - and quickly. Thankfully my daughter is a healthy little thing and hasn't brought home as many bugs as everyone warned me she would from school.

Mom is 82, so I can attest that you can lead a long life. We both have Discoid lupus which mainly effects the skin (I have the wonderful butterfly rash anytime I get stressed), but for years the doctors have toyed with me possibly having systemic as well or in part as I have RA too.

Find out what type your doctor thinks you have. It isn't a single diagnosis, and DON'T WORRY! Like any chronic illness you will have good and bad (weeks), but Lupus is actually rather popular and there are a lot of treatments.

Definitely check out the lupus.org site. They have invaluable info.

PM me if you need support.

Deborah

 

[chell]

For your sake I hope your doctor is wrong. The thing you have to remember if you do have it is that it doesn't have the same effect on every person.

My mother has it and they are not sure if I do or not. I am supposed to get tested for it every year.

No matter what take care of yourslef and eat well, rest enough, exercise, etc. Do not let it get the best of you or it will take over your life. Keep going even on days you have to push yourself.

 

[we3disneygo]

 

[Dan Murphy]

Good wishes, DaisynDonald, hoping all goes well for you.

 

[LBAK]

I have RA and Sjogrens Syndrome and I get tested for Lupus every year. Gotta watch those autoimmune diseases. Keeping you in my thoughts and prayers for a negatgive test result. See a rheumotologist not just a regular MD. They have much more experience for this disease! Good Luck.

 

[DaisynDonald]

Thanks everyone

My Dr. said my test came back positive for Lupus, he wants me to get tested again in 6 months to make sure the test was accurate. I have been having trouble with my white blood cell count being low, dizziness & have been feeling weak since May. I have no energy most of the time, I hope there is something they can do for me. I'm keeping my fingers crossed for a negative test result when I get them done again.

 

[Shellie722]

I have Lupus to and was wondering which test you had that came back positive. If it was your ANA it may mean Lupus or it may not. 20% of females can have a pos ANA w/ out ever developing lupus and about the same percentage of lupus patients never have a pos ANA. Mine goes back and forth but I meet at least 7 of the 11 criteria for a lupus dx- it takes at least 4 of the 11 for a diagnosis. I am in a study also for a new lupus med which seems to work really well and has greatly reduced the number and duration of my flares. Lupus has flares and remissions and attacks everyone a little differently. One great resource I found when I was looking for info after my diagnsis a couple of years ago is the Lupus Support message board on Web MD. The most common organs for lupus to attack are the skin and joints, the kidneys, and lungs but it can attack any organ in the body. Also if your doc continues to suspect lupus you need to be refered to a rhuematologist for confirmation or to determine what is causing your problems. Also you may want to check out a book that has some of the best info availabe, "The Lupus Book" by Dr. Wallace. He is one of the leading rhuematologist in the country if not the World in dealing w/ lupus.
If you have any question at all feel free to pm or email me.

 

[krdisneybound]

I was diagnosed with Lupus (SLE) in May, 1988. The Dr. at that time said I had approximatley 4-5 years.

I have sure proved him wrong, as I am still here. Mind over matter to a certain extent and the will to live and overcome.

I have been very sick from time to time and each tme came out of it more knowledgeable. Have had kidney failure twice and twice it has been reversed.

Read everything you can get your hands on and talk about it. That helps a lot.

 

[mommasita]

I am awaiting my fate in this as well. I have to still gather the courage and the time/strength to go for my tests. Last week the doctor says I show "all signs" of it? I have the rash, blood blisters, fatigue, cold, white fingers and toes, etc, etc..

Of course this may/may not be it, but I am dreading it..

Hugs to everyone

 

[ClarabelleCowFan]

One of my best friends and one of my sisters both have it. There are varying types and degrees of lupus. We have participated in fundraisers for this charity: www.doroughlupusfoundation.org which was founded by Howie Dorough of the Backstreet Boys after his sister passed away from complications caused by lupus. There are some great links and info on their site so check it out.

Hugs to you! My friend has good days and bad days.