View Full Version : NEW
01-06-2009, 02:59 PM
Welcome to our site. Would you care to introduce yourself?
01-07-2009, 12:06 PM
I WAS DIAGNOSED WITH LUPUS 12 YEARS AGO BUT IT WASN'T UNTIL 2007 THAT IT REALLY BLEW UP. LUPUS HAS AFFECTED MY KIDNEY,HEART,LUNGS AND MUSCLES AND JOINTS. I'AM DRINKING ABOUT 13 MEDICATIONS FOR OVER A YEAR AND IT STILL HASN'T GONE INTO REMISSION. ACCORDING TO THE DOCTORS I HAVE DOUBLE STRAND LUPUS (IT'S GENERIC AND I'AM A CARRIER). MY EYE SIGHT IS VERY BAD AND GETTING WORSE DUED TO THE MEDICATIONS BUT NOTHING HAS BEEN DONE. EVERY TIME THEY TRY TO TAKE ME OFF PREDISONE I GET EVEN WORSE. IN FEBUARY I WILL BE GOING TO A NEW DOCTOR HOPE FULLY THINGS WILL GET BETTER. I JUST WONDER HOW LONG WILL IT BE BEFORE I CAN HAVE AT LEAST ONE DAY WITH NO PAIN,DISCOMFORT,SWELLING OR EXTREME FATIGUE.
MEDICATIONS: PLAQUENIL,PREDISONE,METFORMIN,VICODIN,FLEXERIL,TYL ENOL 3,HYDROCHLOROT,VYTORIN,ASPIRIN,FOLIC ACID,LISINOPRIL,IRON,METHOTREXATE
Hi there Maritza,
Thanks for opening up and saying hello. I know it can be hard to do. I'm Rob and I was diagnosed with SLE in 2004. I've been taking Plaquenil regularly for a few years now. I have also had IV methylprednisone treatments twice for my overlapping MS. I have flares on and off, and it seems to cycle every three or four days between tolerable, and not.
This disease is so unpredictable, it's hard for any of us to know where it's headed, and what's next. What works for one person can be totally ineffective for another. Even though there is no "official" opinion that Lupus has a passed down genetic component, I believe it is at least partially passed along genetically because my mother has SLE. Many of our other members here have multiple family members with it as well, so there has to be a genetic component passed along in my opinion.
Sometimes, a new doctor/rheumo can be the key to finding the proper treatment that can help an individual. I hope your new Dr. will be the help that you need. There are many here, who, like you have had to live with this disease for many years. Some have been successful, and some are still looking for answers. Your experience from years of living with Lupus is something that can help others. I hope, if you can, that you can share as much of your experience as possible.
We are a pretty laid back group here, and there's no need to be shy. Please, make yourself at home, and know that you are welcome here.
01-07-2009, 05:57 PM
Welcome to the site MARITZA
Glad you found us. Hope you find some relief soon :)
01-07-2009, 07:02 PM
This is one place where you WILL be able to communicate with people who truly know what you are experiencing, who will never question your feelings, and who will never judge you for your thoughts.
I too wish for you to have a day of no symptoms.
share a smile today,
01-08-2009, 11:07 AM
hello and welcome.Im sending you gentle hugs and a tiny smile as i have a sore mouth :)
01-12-2009, 06:28 PM
Hello and Welcome Maritza;
I see that you've been warmly welcomed by Rob and several other members of our family. I just wanted to make sure that I added my welcome.
Rob has given you excellent information and explained how easy going we are here. I hope that you continue to feel comfortable sharing with us! I am glad that you are here.
Peace and Blessings