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Sallie
09-04-2012, 09:55 AM
Hello! My name is Sallie- I'm not new to having lupus, but I am new to this board (or to any other lupus site, for that matter). I've always sort of "handled" things even though I have had many problems of with my disease, the worst of which being severe kidney disease. I have recently been diagnosed with diabetes (secondary to long time steroids?) and then a month later CNS lupus. Suddenly I'm reeling and feeling like I just need to talk to other people with lupus who may be dealing with some of these same issues...looking forward to hearing your stories.

The Survivor
09-04-2012, 10:49 AM
I think you've made an awesome choice coming to this forum! :D You need all the support you can get. You can check out my blogs about the things that happened to me when my lupus took form. Just wanted to let you know that you are not alone in this battle against lupus.

debbie-b
09-04-2012, 01:17 PM
Hello Sallie,

Welcome to WHL. Sorry you are having so many problems lately.
If you have any questions, just ask. We are here for each other and are glad tgat you have joined us.

Debbie

kim,l
09-04-2012, 05:12 PM
hello sallie welcome whl family please feel free to look at our profiles and message boards we are all here to support one another.

steve.b
09-04-2012, 06:53 PM
i sallie, and welcme.
i am close to your age, just a couple of moons younger.
it is nice that you have found us.... sorry that you need to.

most of us like to care, as if we are family.
one of the easiest ways to let each other learn a little about ourselves is through our profile page.
please read mine to know a little more about me.

again welcome.

wendya432
09-04-2012, 07:11 PM
Hi Sallie, I'm new here, but I will say, this is the board to be at! Such nice helpful people here. :)

tgal
09-04-2012, 08:07 PM
Hi Sallie and welcome to WHL! We are so glad that you decided to join. I too have CNS Lupus and completely understand what you mean. It's nice to know you are not alone.

Saysusie
09-04-2012, 09:40 PM
Hello and welcome to our family. You have come to the right place to find others who have or are dealing with similar issues and who understand and care about how you are feeling. I am so glad that you are here and I hope that you will find comfort, support and answers. Again...welcome.

Peace and Blessings
Namaste
Saysusie

LindaJ
09-05-2012, 07:33 PM
Hi Sallie! Your story sounds similar to mine. I have had lupus for 47 years and I too never sought out any site. I found this one by accident trying to find out about a drug called Plaquenil. On your questions about diabetes caused by steroids. I am not a doctor but from my experience, the answer is a resounding
YES. I first got diabetes when I started on 60mgs of prednisone at age 14. The doctors had me monitor it with diet which worked. When my dosage was lowered, my diabetes went away. then, some 35 years later, it happened again on only 20mg. My primary doctor said it was not the prednisone, which I didn't believe. so I went to an internist who specialized in diabetes. He told me that he could bet that if I got permanently off of prednisone that I would have normal blood sugars. Well, little did I know at that time that I would get a new rheumatologist who would take me off prednisone and put me on Plaquenil! Sure enough...normal blood sugars! To see if that is you, check your blood sugar in the morning and at night. If you take your prednisone only in the morning like I did, you will see that you wake up with good sugar count, but at night or during the day especially, it is high. That is a sign that the high sugars are a result of the prednisone you took in the morning.
By the way, my Lupus also affected my kidney. After about 20 years, they failed. I went on dialysis for 9 months and then got a transplant from a cadavar. I have had my kidney, his name is Virge because it came from Virginia, for nearly 20 years now. I was truly blessed.
CNS lupus..........are they sure? What makes them think so? I think it strange that a new kind of lupus would come after all those years. But I am not an expert on that. Take care. Hope to talk again.

Sallie
09-07-2012, 10:28 AM
Thanks for your thoughtful reply! Congratulations on your kidney transplant!! Great story! I do think the steroids have played a big role in the diabetes- unfortunately, I am already on every other lupus med (plaquenil, rituxan, cellcept) and we can't get my prednisone dose down. The Cns lupus dx with MRI and symptoms...I have had some symptoms before (drooping side of face) but just never labeled. Just finished 3 days of 1000 mg infusions of solu-cortex (so much for blood sugar control) which I already feel are helping my symptoms.

LindaJ
09-07-2012, 07:50 PM
Good evening Sallie,
Thanks for the congrats :). I am glad that at least they are starting to get the symptoms under control. Perhaps this will be the start of recooperating.
Don't worry that much about the diabetes for now as first they need to get Lupus contained! How much prednisone are you on right now? I have to admit, I have not been on anything else but prednisone and last was Plaquenil. One of the meds I need to take for my transplant is used for Lupus though....Imuran. Have you ever heard of it? Currently, I'm on no "lupus meds" because of a problem I have with my eyes....not Plaquenil caused but not a good idea to take Plaquenil with this other 'condition'. Hope you continue to improve!!

theLword
09-11-2012, 11:05 AM
Welcome Sallie! :)

HOPEFULSOUL
09-17-2012, 02:17 PM
Hey sally, im glad someone has lived so long with lupus because to me it seems like all hope is lost... i was diagnosed April 2012 and i still cant come to terms.. im just feeling really down at the moment...

Sallie
09-19-2012, 10:58 AM
Hopeful Soul- hang in there! Since being diagnosed, I finished college, grad school, married, adopted a child, and had a great career as a nurse practitioner! There have been flares and remissions, but I luckily have fabulous doctors and supportive friends and family. Lupus is challenging and I am still learning -- after all these years -- how to live with it and not let it define my life. We all need the support of others (why I joined this forum). Let me know if I can help..

steve.b
09-21-2012, 03:15 AM
Hopeful Soul- hang in there! Since being diagnosed, I finished college, grad school, married, adopted a child, and had a great career as a nurse practitioner! There have been flares and remissions, but I luckily have fabulous doctors and supportive friends and family. Lupus is challenging and I am still learning -- after all these years -- how to live with it and not let it define my life. We all need the support of others (why I joined this forum). Let me know if I can help..


this is a great story about living life despite what your health says.
you are a good example to the rest of us!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!