View Full Version : I have just been diagnosed with SLE

05-26-2008, 07:11 PM
Hi all! This is strange for me, because I'm a private person, and used to helping everyone else. Now I am coping with something which is so hard to believe is true. I was diagnosed (confirmed by my Rheumatologist) with SLE a month ago. I had been to an orthopaedic surgeon, neurologist, had MRI's, CT's, Xrays, lots of labs, Urologist, hematologist, Opthalmologist and Rheumatolgist.

I had been falling asleep while trying to watch TV, having wierd dizzy spells for the past year, having trouble concentrating, had multiple issues with short-term memory and lots of arthritis pain, headaches and other fun. In March I woke up with an awful headache, nauseous and dizziness so bad I could not get up out of bed. This was different from the migraines I get.
I was in bed for 2 days. On the 3rd day I asked my husband to drive me to the ER and they admitted me. I have a small vertebral lesion on my cervical spine with some bony destruction, so they thought it might be related to that..... Well, thanks to my awesome Internist, she decided to do an MRI of the brain, which came back with some issues. She did blood tests and came to my office (we work together) to tell me I have Lupus. They ruled out multiple sclerosis first. I had a positive ANA and two positive DNA double strand tests, one higher than the other. And my rheumatoid factor was also elevated. I was in complete denial because I don't have any skin rash. Well my Rheumatologist confirmed that the postitive ANA is the real indicator, along with all of my symptoms, and the 2 DNA double-strands - SLE it is. I am on 200 mg. of Plaquenil twice daily, and it hasn't helped yet. So I take supplement with 800mg. of Ibuprophen. It is amazing because when I think back I probably have had Lupus for years. I have had some very strange pains over the years, lots of pain in my spine and other joints. My family thought I was lazy, but they read the internet articles I printed and are begining to get it. The fatigue is awful. I've read alot and decided to make the best of it. I struggle to get out of bed most mornings, but drag myself to work. I have not told my boss yet. I think it is best not to, although I can't seem to concentrate like I used to. I am great with interactions, but have some trouble focusing on financial issues. How many of you are working?

05-27-2008, 07:57 AM
Hello and welcome Barbeefaye;
Many of us, when looking back, have determined that we suffered from the symptoms of Lupus for many, many years before we were diagnosed. Like you, we went to doctors for various issues, only to see them scratch their heads in bewilderment.
Your headaches may be what is called "Lupus Migraines". While they feel much like migraines (often without the aura), they do not respond to Migraine medication because they are a symptoms of the underlying disease (the Lupus). For many of us, the treatments that we take for our disease often helps to alleviate the Lupus Migraines.
How long have you been taking Plaquenil? Did you doctor advise you that it may take months before you actually see or feel the benefits of Plaquenil? Once you do feel and/or see the benefits, the drug has been known to work very well for most Lupus patients. Often, doctors will prescribe Prednisone with the Plaquenil so that you can start getting relief from your symptoms sooner. You might want to ask your doctor about this. The two drugs together can help the sore and aching athritic like pain as well as the fatigue.
Fatigue is one of the most misunderstood symptoms of Lupus. It is not like fatigue from working out...it is a completely debilitating fatigue that prevents us from even getting out of bed. I am glad that you decided to educate your family about Lupus and about fatigue because it can alter you entire way of life.
Everyone here is very helpful, informative, supportive and understanding. You will find that there is always someone here to answer your questions or to give you support when you need it. Please know that you are not alone.

Peace and Blessings

05-27-2008, 03:20 PM
Hi barbeefaye

I'm in lupus limbo, my family doctor is watching my blood work and my rhuemy doesn't believe in lupus. She's treating me ofr osteo arthritis and to heck with the rest. :shock:

I'm on plaquenil and arthrotec 75. Fortunately for me I'm not in much of a mess just now.

Welcome to the board, this is a wonderul site. Helpful and friendly people here.

05-27-2008, 06:40 PM
Hello, barbeefaye. It's a shocker to find out you have SLE, isn't it? I'm glad you had a clever doctor that knew to do the right tests. You might have gone a lot longer without a diagnosis.

Plaquenil helped me a LOT, but what Saysusie said is so true...it took several months to do it's 'magic.' Give it time....it's likely to make a real difference for you.

I hope you have some relief from your symptoms soon. Glad you found us! Welcome to the 'family.'


Pretti in Pink
05-27-2008, 06:46 PM
Hello barbeefaye,

Welcome aboard. I believe this one new to many of us but everyone is so warm, welcome, concerned and loving that it just felt like a great cyber home.

05-27-2008, 07:53 PM

I have been on Plaquenil for 3 weeks now. My doctor told me it will take a while to work. He said the Plaquenil, 200mg. 2xdaily is the "beginning" treatment, primarily because I'm having pain in my lungs too. He is reluctant to start with Prednisone, or other steriods yet, unless I get worse. Getting up in the morning is the hardest, but I have found that once I get to work and "involved" I think less about how I feel. I went on a website for Plaquenil and the patient's ratings are encouraging. Regards to all, and thanks for the response. It;s good to know I'm not alone!!

Regards from "sunny" Las Vegas.... I find myself looking for shade.... :)

05-28-2008, 02:15 PM
I've been on plaquenil since December....I wanted off it because I didn't think it was doing anything for me. One week before my appointment with my rhuemy I realized i was zipping through my house work, happy snappy and then it hit me. This is the first time in two years that I could do house work with out being in utter agony. So I guess it's working :oops:

Give it time :)

05-30-2008, 01:08 PM
Hey Barbeefaye...

Welcoming you with open arms..

Denial...even after having the diagnose for years, you still at times go into denial. Some days I want to believe it is like a cold and too I get bored of being with IT. Living with IT..so, I buck IT. Then I do more damage and wake up from my denial and live life small...

Work...nope. I retired early at the age of 38 before the market took a dip after 9/11. I had drawn out my funds and reinvested. I missed the slump...I am grateful for that. I didn't retire because of IT though...the back, married...changing careers. The career change never took place, IT did. Managing IT is a job...

Enjoy the forum...lovely people to meet, as you know you have met some...read about. See you on the posts...