View Full Version : New to this site, and happy I found it! :)

03-22-2012, 06:02 PM
I was diagnosed with SLE in 01' but I think my first onset was in 97', when I had my very first seizure out of the blue. At the time of diagnosis I was a senior in college, swollen so badly that I could not walk. Barely making it to class, always feeling fatigue, couldn't sit or stand for too long and I was just baffled at what could be wrong. Oh and I had no voice overnight. I woke up with a whisper voice and its still a whisper. After several lab test and a kidney biopsy it was determined that I had SLE. Its been eleven years and I've definitely had my ups and downs. I've had about 4 or 5 horrible flares that resulted in Cytoxin, ritoximab, plaquenil, prednisone, blood transfusions and Cell Cept just to name a few.

I am grateful that I had a long stretch of remission which allowed me to have a successful pregnancy without any complications. My rheumy was able to keep me on a low dose of Imuran, Paquenil, Folic Acid, Vitamin D3, Aspirin (Baby), Lovenox and Keppra throughout my pregnancy which worked. No seizures and no flares. My son is now 14 months, happy and healthy but now the beast is back. It's not in full force but it's back. I'm extremely fatigued, arthritis is appearing in my hands and feet, my neck is constantly stiff and painful, and more importantly I'm starting to see changes in my labs, low white blood counts, anemia etc. Because of the arthritis my rheumy decided to start me on Orencia treatments once a month, which is starting to help and I am only in the "loading" stage. In addition to the Orencia, she wants me to discontinue the Imuran and return to the Cell Cept. I am not too happy with returning to the Cell Cept. I don't like the way it makes me feel. My rheumy is suggesting that I take some time off work (I work fulltime) until we get things in order. I am contemplating it but not happy about it.

Just frustrated with SLE its good to find a forum. I'm not alone!!!

03-22-2012, 07:13 PM
Hi and welcome to WHL! Your story is much like mine with the seizure out of no where! Please make yourself at home here. Feel free to look around and post whenever you want to. We are really glad to have you as a part of our WHL family!

03-22-2012, 09:08 PM
hi, i am glad you found us also.
please let us know a little about you.
one good place to leave it is on oyur profile page.
you can let us know what you want us to know about you.

please also take the time to read mine.
i am looking forward to getting to know you through the forum.

03-24-2012, 04:29 PM
Hi Wally-Pooh,
Welcome to WHL. You've come to the right place to find support and information. We have several members who are dealing with work and young families, as well as Lupus. I'm sure that you will get acquainted with them soon. Feel free to ask questions or add comments.

03-24-2012, 06:17 PM
welcome wally -pooh to the whl family.