View Full Version : Just found this group

01-06-2009, 06:13 PM
I just found this group as I was looking up more info about my old foe, SLE. Christmas was an 8-day hospitalization due to a serious flare - unfortunately this was my 6th visit for 2008. We have a local support group, and I do attend when they are featuring speakers - I'm not a big joiner, so don't go to the regular meetings. Online support would be a big help at times! It's often difficult to communicate to others, even very supportive friends and family, exactly how you feel - why you can't participate, why sometimes you can't even get out of bed - I know I'd have a hard time understanding -especially when everyone says, but you look so well! Sometimes I think everyone is just worn out by hearing I'm in the hospital again - that it's not serious, just a regular routine. I'm in my early 50s, been diagnosed almost 10 years - two strokes, heart attack, many DVTs, vasculitis, gastroparesis, osteoporosis and many other side effects of prednisone, on and on. I think I've had every -itis in the dictionary! I have a great rheum and had second and third opinions at two great East Coast research centers. I thought about going into a trial, and wonder what you all have to say about that, and if anyone out there has participated. Happy New Year, hope to hear from you.

01-07-2009, 05:13 AM
welcome tenlives.

you so accurately eplained the lives of many of us with this debilitating disease. I have considered trials, but have not actively pursued options. This is a good area for each of to research and add feedback. Rob and Saysassie and Danica are extremely knowledgeable about the disease, and maybe can offer info on trial treatments.

welcome, hope you have a good day,

01-07-2009, 06:00 PM
Hi tenlives

and welcome :)

I've never tried trials, mostly cause I'm chicken and I usually get what ever side effects medications have to offer :P

Good luck with yours, let us know how it's going.

01-12-2009, 06:43 PM
Hi Tenlives :lol:
Welcome to our family. As you can see, many of us can completely identify with your story as we've been there often, ourselves. I'm glad that you felt comfortable enough to join us and I am sure that there will always be someone here who will understand what you are going through and who can offer you help, advice, information and support.
I've never participated in a trial either. My biggest fear is that I would be the one taking the placebo and getting no treatment whatsoever! I'm not even sure if this is how trials work, but I imagine that they'd have to compare their trial meds with persons taking no meds at all :cry:
At any rate, I can't offer you any suggestions in that area. I wish you the best, whatever you decide.
Again....welcome to our family and I hope that you share with us often!

Peace and Blessings