View Full Version : Lupus Drug Benlysta Effective In Phase 3

07-20-2009, 06:53 AM
This is WONDERFUL news today. We may have a new lupus therapy in the second half of 2010 ! ! !


07-24-2009, 03:54 PM
Yeah hey

I got this email sent to me 2wice today on diff networking sites

looks good hopefully...we all kno what happened to the last drug!


07-24-2009, 06:58 PM
Thanks for the link.... :yes:

This sounds very promising. Let's hope and pray it gets on the market sooner rather than later.....and that it works to reduce the suffering of ALL those who endure Lupus on a daily basis.

Let's hope we're one step closer to the cure!

:cool2: Lori

07-25-2009, 02:23 AM

It will be in our life time

If not i want a refund from GOD


07-25-2009, 03:45 AM
Oh, this does sound very promising! It's great when articles like these surface. Sometimes it seems like no ones looking into easing the suffering of Lupus patients or finding a cure. It's such a widespread ailment, but so obscure to those who don't have it..

Or is it just me who thinks this.. >_>

07-25-2009, 10:43 AM
Oh, this does sound very promising! It's great when articles like these surface. Sometimes it seems like no ones looking into easing the suffering of Lupus patients or finding a cure. It's such a widespread ailment, but so obscure to those who don't have it..

Or is it just me who thinks this.. >_>

Oh, I'm right there with you, Jerzi....you pretty much nailed it on the head...."it's such a widespread ailment, but so obscure for those who don't have it".....

I would like to add that although it sometimes "seems" like no one's looking into easing the suffering of Lupus patients, or finding the cure....we must remember that there are MANY people behind the scenes around the world that ARE doing research for us. People that are dedicated and work tirelessly to unlock the mysteries of Lupus.

When I was first diagnosed at age 18, I was referred to an Immunologist at Oregon Health Science University in Portland. During the first few years I saw him, my Lupus was very active....pretty much constant flares. Since OHSU is a Medical School and teaching hospital, whenever I was an inpatient, I could always count on being seen by numerous medical students. At times, it became intrusive and repetitive, always having to repeat the same questions....explain your Lupus to them. After a few years experiencing this, I began to realize that sharing information was a way to help educate this upcoming generation of medical professionals about Lupus, so I began to view every opportunity as a chance to do just that. If they were curious how my Lupus started....what my first symptoms were.....how it had affected my life, etc., I would tell them. So I told my story over and over and patiently answered hundreds of questions. I thought of it as my small way of helping others with Lupus down the road.

A few years later while my Lupus was going through a roaring, active phase, my Lupus doctor told me an OHSU colleague of his was doing some Lupus research and was having difficulty finding patients with active Lupus living close to Portland. He desperately needed a patient to donate some blood for research, and would I be willing?? Of course I was....you didn't have to ask me twice. It wasn't a clinical trial, just a few professors working with researchers and medical students to try to answer a few research questions about Lupus. So I spent an entire day at the local Red Cross donating several pints of blood and received a lovely Thank You letter from the researchers, and a surprise $50 check (I was not expecting) from their grant fund.

Then I went on about my life...figuring I probably would never really know if I had made any difference, but hopeful, nonetheless. I always remain hopeful.

Fastforward 6 years.....I'm sitting in my hospital bed one morning, having been admitted for some kidney issues and a miscarriage. A group of doctors and med students show up for morning rounds. At this point in my illness, I've got a few years experience under my belt, so I've grown a bit more cocky and sure of myself with doctors (just a little), so I always had my own list of questions for the Rounds doctors. I would quiz them on random things....or ask them what their latest golf score was. :laugh2: At the end of rounds, 2 of the Interns asked if they could come back later to look over my chart more and ask more questions about Lupus. I said sure, but they had to bring me a chocolate milkshake from the cafeteria. They agreed. :yup: I had learned how to get what I wanted while in the hospital.

That afternoon, milkshake in hand, they came back and took turns scrutinizing my chart and asking me endless questions. Suddenly, the one looking through my chart, looked up and said, "I don't believe it....I worked with your blood doing Lupus research quite a few years ago!" He had seen my maiden name way back in my chart (I was married at this point, with the last name Wilson). Confidentiality practices were quite different way back then, so last names and medical record numbers were routinely collected and shared when doing research. He had instantly recognized the last name because he had seen it on my vials of blood nearly every day for about 2 years while doing his research...so it was a name he wouldn't forget. What do you think was the first question out of my mouth?

"Did my blood make a difference for Lupus research....were any questions answered...did I help others with Lupus?"

The answer to all 3....a resounding YES! He said they had made great discoveries...answered many of the questions they were investigating, because they had numerous vials of my blood to use over a 2 year period. He told me that every question answered was a stepping stone to other research, other questions....and they build upon each other to take researchers in the right direction, hopefully on the road to the cure. He told me there were times when he was sitting in the lab, that he would wonder "who is this woman with Lupus, what is she like, how has her life been changed?" Never expecting to EVER meet me.

Two peoples lives were changed that day....his because he got to put a face...a real person...with the name, and he got to shake my hand and tell me thank you, personally......and mine because I realized that there ARE dedicated people in the world that care about others that are suffering with Lupus. This man had decided after a few years of researching Lupus, that he wanted to become a Medical Doctor and specialize in Rheumatology to actually treat patients.

So keep in mind the impact you might potentially have for the future of Lupus...with something as simple as donating your blood or tolerating the questions of yet another medical student.

My apologies for such a long post, but Jerzi's comment sparked this memory from my past. And reminded me that there are people out there who care about our suffering. I was blessed to meet one. Though we don't know their name or their face....they are there, nonetheless. :yes:


:cool2: Lori

07-25-2009, 11:09 AM
What a wonderful story! It makes me think, once again, about fate and the existence of a master plan; everything happens for a reason!
How awe inspiring is the fact that the two of you should meet, that he would remember your name after wondering about who you were, and that you should learn that your blood had done so much for the research of Lupus!
Thank you so much for sharing your story with us and for letting us know that our disease is not forgotten!

Peace and Blessings

07-27-2009, 10:29 PM

What a beautiful story you have. Thank you for sharing it and thank you for sharing your blood all those years ago. You may have helped each and every one of us. I am thankful for you and what you have done:veryhappy:


07-28-2009, 08:58 PM
hi lori,

thank you so much for sharing your story.....what a special treat to be able to meet the person who studied your blood every day....and who subsequently contributed to your personal care. Saysusie is right, your story reminds us to ponder the idea of fate and a master plan....personally, i believe in both.

07-29-2009, 01:18 PM
Lori, thank you so much for posting that story. It's fantastic - really made my day!

07-29-2009, 04:31 PM
Saysusie, Danica, Phyllis, Brian....

You are very welcome! :veryhappy:

Sometimes my posts around here can be enormously L O N G .....and I struggle at times to share the right things at the right time....to be uplifting and encouraging.

I never really intend to write that much, but sometimes a memory, like that one, comes flooding back and it pours out with a vengence....like I can't stop it. When I get that feeling, I usually go with it and tell my story.

That one happened to be a very moving experience for me...one that changed my life and my perspective on Lupus from that day forward.

Now, I am always aware of the impact that other people's choices....other people's lives, other people's hard work and devotion to their career, can have on our own lives and health.

I very much believe in a Master Plan for our lives....one that comes from the Master Himself.

And I firmly believe that He puts us in the exact right place, at the exact right moment of time, to fulfill that plan. He crosses our paths perfectly. We may not understand at that time...we may not always understand even down the road a ways when we look back....but I believe someday, in Eternity, we will ALL understand. And when we are there, there will be no more Lupus and no more pain and suffering. That's where my eyes are fixed!

I am thankful that He has placed me right here, at this time in my life and yours, and crossed my path with all of you.

With much Love,

:heart: Lori

08-05-2009, 10:37 PM

Don't let the light go out on yours.............


:cool2: Lori