I really would like to know how long people have had Lupus ? I have had Lupus for over 1 year.

Hi Thiatt,

Early 2002, a rheumatologist told me I had FMS. In 2005 another rheumatologist told me I might have early lupus and kept watch on labs and symptoms and placed me on Plaquenil to help alleviate inflammation and lessen any possible organ damage. On February 13, 2006, I had a confirmed lupus diagnosis via positive ds-DNA tests. HOWEVER, that diagnosis was "un-confirmed" in 2007 when other lab tests failed to validate the lupus diagnosis. The fatigue, so great, tests to rule out sleep disorders were run late 2005. It was at that time I was informed by my primary doctor I had chronic fatigue. Finally, just this past year, the rheumatologist confirmed the Lupus. Since then, I’ve been on disability as I haven’t been able to really do anything, especially as a nurse.

I’ve been through all the emotional things you describe, and I think I agreed to the long trip for my husband’s sake. I have been determined to not let the lupus get the best of me as well. However, I was really afraid to do the trip … just knowing my body and what happens; I just did it.

I take a lot of medication including pain medication and some antiepileptic medications that help with the neuropathy and Plaquenil to help with the lupus symptoms. I am comfortable more with the medications. I also listen to my body and take rest periods when needed. I really do understand.

People are afraid to approach us as they don’t understand what lupus is. We have to educate them if we can. If they don’t want to be educated or if they don’t want to understand, then they aren’t really “friends” or they are just afraid to understand lupus. I’ve had people say, “did the doctor really say you had lupus?” Most likely this is because of the crisscross way I was diagnosed … not unusual.

You wrote, “I really think people are afraid of what they don't understand” and that’s very true.

Please don’t be afraid to vent on this site. It helps to clarify things sometimes. Hope to see you on the Board soon!

I have been diagnosed for almost 30 years. And I know I had it for a few years before that. I have had APS, another autoimmune disease for 18 years. I have had my share of problems but am doing ok for now.

My diagnoses was different from most. The first doctor I went to for hair loss knew what I had. He had a friend with lupus as saw what was wrong right away. I am very lucky I never had to go through the rounds of doctors many patients have to go though.

Alison

Hi,
Tonight I'm trying to learn my way around the message board and the chat. It took me awhile to find my way back here.
You are the first person that I've been able to talk to. Thank you for responding !!
Have a great night and wonderful day tommrow.
T

You are the 2nd person I've been able to talk to. Thank you for responding.
30 years. Have you kept a journal ? Seriously ! This has been so confusing for me. Doctors, Doctors, Doctors & more Doctors. Even though you did not go through the Doctors revolving doors, I'm sure you have endured much pain. I feel for you.
I am so glad your OK. I mean that Sincerely !
Were you born with Lupus ? do you think ?
Not to be ignorant but what is APS?
T

I don't think I had lupus when I was little. I grew up in San Diego and I think the sun would have trigger something. I don't really have much pain, and I am thankful for that. I know it could be so much worse.

I am actually on 3 lupus boards, this one isn't very active. And an APS board. What is APS? The full name is Antiphospholipid Antibody Syndrome. It pretty much means I have thick blood. Because of it I have had 3 strokes. If you think lupus is hard to diagnose, this disease is much harder. It often is associated with lupus. It seems like if you have 1 autoimmune disease you are likely to have another. Many people with lupus have fibromyalgia. Things starting turning bad about 20 years ago. Then things got REALLY bad about 6 years ago. But, things ares starting to even out now and I am hoping for the best.
Alison

[This Message was Edited on 02/02/2009]

I'm coming up on three years since the diagnosis, but I've had symptoms for five years. Very few people know that I have Lupus, just family and a few close friends. I prefer to keep it out of my professional life and don't talk about it much.

I have also had APS antibodies. There are three types: Anticardiolipin, Lupus Anticoagulant and B Glycoprotein. Those are antibodies that cause blood clots. I also have ITP (low platelets), but have been in remission for a few years.

Hi Thiatt,

You did not say your age.
I'm 61 and have SLE since 1976. I have had some serious problems, but for the most part I've been pretty lucky.

Everyone with lupus has a different story. My biggest problem was stress. When I was under a lot of stress I usually flared. I raised a blind son, now 34 with a family and a English Proff. and another son with a bad drinking problem for 15 years, now 40 and been sober for 9years. So things are much better now adays.

I think as I get older the effects of the lupus will become more of a problem because of my age.

Thing I have learned over the years is, take care of yourself first. Listen to your rhemy, but don't be afraid to question them. You could join a support group, contact your local hospital.

I watched my mother die of lupus in 1961, she was 32, many years of suffering. So I was really afraid of lupus. But now I know people don't usually die from lupus because it is under more control and the medical community has come a long, long way from 1961. They didn't have a name back then.

I think once you have lupus, you always have it. It goes in and out of remission.

Maddybear

I just read the boards and saw this. Lupus is a chronic condition. You can go into remission and not have another flare or you may have many flares. Each person is different. However, if I understand correctly (I am not a nurse or doctor), lupus is a chronic condition. So, once you have it, you have it. I have had it for a long time.

I wouldn't worry thought. Just talk to your doctor about your symptoms, management and concerns.

I was diagnosed with CNS Lupus in 1980 . I suffered a life threatening episode at that time, but was given high doses of Prednisone, which were gradually decreased over a period of six months. Since then, I have had minor flares and consider myself fortunate. I rest after lunch every day and avoid the sun as much as possible. Stress is impossible to avoid, but too much is not good for someone with this disease.

I was very ill for many years, one hospital after another. When I was finally diagnoised in 1991 I was put on various meds for my different problems and have avoided hospitals for several years. I have seizures, sjogrens, and a few other odd problems. Like most people with Lupus the sun and heat drain me. I had to retire on disability because I had such severe
fatigue . ( I taught 2nd grade so this was not good). Take care of yourself.

Thanks for responding.
I hope that your comfortable and most everything is going smoothly !
T

Yes, I have had it for a real long time.. I am in my 40s and it really kicked in hard in my 30s.

Hello,
it is coming up to 10 years for me. I am only 24:)