~Believe51~Diagnosed With Lupus!~
 

I have just been diagnosed with Lupus, multiple types of the disease. A Sister here suggested that I write to you all. I do feel selfish considering your problems with your own beast.

Although this is not fatal the disease can be if I do not control the symptoms. I have had the Lupus rash on my normal clear complexted face for 6 months now. No one could give me a reason besides contact dermatitis even though nothing changed in my life. I am so full of edema that water pills are proving useless and have an additional 30 pounds of weight. I was down to 115 pounds and I am so bloated that if you poke my feet, your print stays there for 10 minutes.

I might have had the disease for several years but stayed fit enough to fight it, not knowing of course. Eating right, severe workouts, meditation, yoga, antioxidants..etc. I can no longer handle the disease, I am one terribly ill little girl. The pain makes me feel like I am going to die. I am worried about blod clots and pain, the kidneys and removing the toxins from my body. This woman that took a total of 3, .05 mg of Xanax through a 37 month ordeal is on so much medication right now.

Anyone have any imput? I am so very lost. I cannot believe I am sick without Mighty Oak by my side. I need him so bad that it makes me cry.

Re: ~Believe51~Diagnosed With Lupus!~
 

I must add that I cannot feel my hands or feet and the lower part of my face is numb.

Thanks for any responses in advance.>>>Believe51

Re: ~Believe51~Diagnosed With Lupus!~
 

No one can replace the Mighty Oak but you know your friends here will stick by you.
Maybe you can think of some of the things that got you through that earlier ordeal and apply them now to your own situation.
You operate very well in support groups. Have you found a forum specific for Lupus? And are there any community resources that can provide assistance, like Visiting Nurse? You are a mighty oak yourself and will prosper. I am sorry you are feeling so lost and alone right now. Keep the faith.

Re: ~Believe51~Diagnosed With Lupus!~
 

Hi Marie,

I, too, am sorry you are feeling so poorly. Both physically and emotionally. Life can be so hard, can't it? Often times it seems as if it isn't one thing it's another. That being said, I guess it shows that we all are in the same boat one way or another and reaching out and helping each other through whatever it is, is what we should be doing.

I offer you my support and love. I echo what Bonnie said and hope you can find some type of support group in your area where you could have face to face contact with others who are experiencing what you are. Please come here for support, encouragement and love as we have a LOT OF LOVE to go around.

Hang on sweet Marie. God is with you and your mighty oak will always be close bye.

Peace and love......

Mary Jo

Re: ~Believe51~Diagnosed With Lupus!~
 

So sorry to hear about your Lupus. Hope you'll find a good treatment plan that will work long-term for you and not diminish your quality of life too much. I feel for you and I'm sure the MightyOak will protect you,

Re: ~Believe51~Diagnosed With Lupus!~
 

Oh Marie, I am so sorry you are not feeling well. I wish I had something specific to offer you, but alas, I don't. I will be keeping you in my thoughts and prayers. Do you have a good Dr. that you trust? Is there any family close enough to be helpful? I hope that you find relief for your symptoms soon, and can begin to feel better.

Gentle hugs,
Barb A.

Re: ~Believe51~Diagnosed With Lupus!~
 

Hi Marie,
I am sorry to hear of a new struggle you have and will pray that things get better. Finding a support group like this one sounds like a good idea. Continue to post here so we can support you and hear the good news when you start to feel better.
Hugs,

Kris.....

Re: ~Believe51~Diagnosed With Lupus!~
 

Sorry to hear about the lupus. I know you will take good care of yourself, because you are a figher. You have already demonstrated that again and again.
A lupus support group sounds like a good idea, because you will find other people there who will understand. They can share information with you and you can share information with them.
All the best to you. Drop by once in awhile and let us know how you are doing.

Re: ~Believe51~Diagnosed With Lupus!~
 

Hi Marie,

So sorry to hear that you are not well and I feel so helpless that I cannot offer any helpful advice.

I just wanted you to know that I am sending a lot of love and good wishes to you. You were so nice to me on this site when I needed it and and as others have said you are a very true fighter.

Take care.

Janie

Re: ~Believe51~Diagnosed With Lupus!~
 

Dear Marie,

I am so sorry you are not doing well, but I am sure you will find suitable medical aid. Just wanted to let you know that I send you hugs and that I wish all that bad sympomts go away soon. You are a great fighter and will knock this out. Love always and thinking of you.

Paty

Re: ~Believe51~Diagnosed With Lupus!~
 

I've very sorry to read your news Marie, but like all the other member's here I too, have seen your strength in the face of terminal cancer with Ed and know you will find this hidden strength again to help you through this.
I'm unfamilier with the illness so not competant to offer advice but will be thinking of you my friend. xx

Re: ~Believe51~Diagnosed With Lupus!~
 

Marie,

So sorry to hear about your suffering. Hope you get to have the symptoms under control.

This article has a brief descrition of what Lupus is about which I thought some of us might like to know:

http://www.medicalnewstoday.com/articles/222406.php

Re: ~Believe51~Diagnosed With Lupus!~
 

Marie,
So that is what was going on...I knew something was up (or down depending on your perspective) from your FB posts. I was about to contact you through that. Glad you came here, you know we are still your family and love you.

True, nobody can replace your MO, but you are still supported "in sickness and in health" and by your loving family here.

Bonnie R was right on - there surely are support groups for lupus and you will find them. You are one strong lady; you've carried so much for so long. You know that is a gift, not a curse, to let others carry, and care for you.

I do not have much experience with this disease (one at a time is enough!), but I do know a woman who is living with it.

Although you are going through a very rough and scary time now, people CAN get through it and do. Knowing what you're dealing with is a huge step. You know this knowledge gives you power.

Believe.

Much love,
chris

Re: ~Believe51~Diagnosed With Lupus!~
 

Dear Marie -
Very taken aback to learn about this new problem. As Chrisy says, knowing what it is can get you to a little better place mentally. I hope you can get the syptoms under control to achieve that place.

"Multiple types" you said. I would be curious to know what came up in your labs to indicate that. Once I was tested for all kinds of arthralgia/lupus/rheumatoid diseases, but only my ANA came back as positive and all the other indicators that could point to a particular syndrome were negative.

My rheumatologist told me that various stresses can produce symptoms of all sorts. STRESS has been your middle name for a very long time. You have my best wishes and powerful prayer for a recovery to the extent that you can function and persue your passions once again.

Re: ~Believe51~Diagnosed With Lupus!~
 

Hello Marie,
You have always been such a support for Mighty Oak and all of us here. I would not be at all suprised if he was still there with you, for you, in many other ways.
I wish you well and all the best of care.
Maryanne

Re: ~Believe51~Diagnosed With Lupus!~
 

Marie,

Sorry to hear about you not feeling well. I still think of you often.

Amelia

Re: ~Believe51~Diagnosed With Lupus!~
 

Well Rats!!! I was hoping the Universe would grant you some up time after all you went through. This just Sux. Pardon my French.

I am sure your Mighty Oak is watching over you. He is there, you just can't see him. Talk to him, tell him how you feel, and how you want to feel his arms around you. His spirit will hold you. He can't take away your suffering, like you couldn't take away his, but he will comfort you as you comforted him.

Take good care of yourself. Lupus can flare up, and then subside again. May it do that soon.

Hugs

Jacqueline

Re: ~Believe51~Diagnosed With Lupus!~
 

believe 51--trust me to have an article.

Just recently the first new drug against lupus in FIFTY years was approved:


New lupus drug results from Scripps Research technology

The long path to Benlysta emphasizes importance of basic research

LA JOLLA, CA – March 9, 2011 – For Immediate Release – Scientific advances at The Scripps Research Institute were key to laying the foundation for the new drug Benlysta® (belimumab), approved today by the U.S. Food and Drug Administration. Benlysta®, which treats the most common type of lupus, is the first in a new class of pharmaceuticals that prevents the body from attacking its own critical tissues.

"I am deeply gratified that our scientific findings have proven so valuable to drug discovery," said Richard A. Lerner, MD, president of Scripps Research. "This development underlines the importance of basic academic science in laying important groundwork for life-saving medical advances."

Benlysta®, developed by GlaxoSmithKline and Human Genome Sciences, is the first new drug treatment for lupus in 50 years.

Short-Circuiting the Cycle of Lupus

Benlysta® was approved for systemic lupus erythematosus, a chronic, life-threatening inflammatory disease affecting the joints, skin, kidneys, blood, heart, and lungs. It is often simply referred to as "lupus" (although there are other types of lupus, including one that affects solely the skin). Estimates of the number of Americans affected by sytemic lupus erythematosus range from 161,000 to 1.5 million, according to the U.S. Centers for Disease Control. Lupus can occur at any age, but first appears largely in 15- to 40-year-olds, the majority of whom are women.

Lupus is an autoimmune disease, which occurs when a person's body produces an immune response against its own tissues instead of solely attacking foreign invaders such as viruses, bacteria, and other toxins.

Symptoms can include debilitating fatigue, painful and swollen joints, fever, skin rash, and kidney problems. The disease can also lead to arthritis, kidney failure, heart and lung inflammation, central nervous system abnormalities, inflammation of the blood vessels, and blood disorders.

Benlysta® (itself a type of immune molecule) acts by targeting a specific protein called B-lymphocyte stimulator, or BLyS, involved in stimulating the "autoantibodies" causing lupus and certain other autoimmune disorders.

Benlysta® is the first approved drug that disables BLyS, thus preventing the immune system's destructive attacks against the body.

The Foundation In the 1980s the therapeutic potential of antibodies—which recognize a wide range of foreign pathogens, then alert the immune system to the presence of the invaders—was widely recognized, as they are an important part of the body's natural system for fighting illness. But tapping that potential had proven difficult. Researchers at the time were working mainly with short snippets of antibodies and testing their effects through a slow and painstaking petri-dish process.

But Lerner led a Scripps Research team that made two critical advances to transform the field, ultimately leading to the discovery and development of drugs such as Benlysta®.

The researchers first developed a method of combining different pieces of antibodies isolated from human or animal cells into proteins long enough to encompass natural antibodies' most critical portions—the parts actually binding to and neutralizing infectious agents or otherwise unwanted material. The scientists dubbed this technique "repertoire cloning," because it allowed them to build libraries of compounds that encompassed the full repertoire of a natural immune system.

This was a game-changing development.

Eliminating the Petri-Dish Bottleneck

But even with an expansive repertoire, putting it to use was a separate problem. It was a second key Scripps Research discovery that helped eliminate the petri-dish bottleneck.

In 1991, Lerner and his colleagues pioneered a technique for employing phage display to facilitate large "combinatorial antibody libraries" to find human antibodies that could be used therapeutically.

Combinatorial antibody libraries allow human antibodies to be identified directly by searching among billions of antibody variants taken from human blood samples to find those that bind to a particular target—such as BLyS—involved in a particular disease.

In this technique, the scientists hijack the inner workings of phages (viruses that attack bacteria). By inserting genetic sequences encoding active portions of antibodies, the researchers are able to make phages displaying on their surfaces the antibody of interest. These antibody-displaying phage particles can then be tested en masse for their ability to bind to molecules of interest. Successful binders can then be purified and identified as a target for additional research.

With the British Medical Research Council (MRC) Laboratory of Molecular Biology, Scripps Research licensed the inventions to Cambridge Antibody Technology (now part of AstraZeneca) to facilitate exploitation of the technology for creation of new medicines. In 1999, Cambridge Antibody Technology partnered with Human Genome Sciences, which entered into a co-development and commercialization agreement with GlaxoSmithKline in 2006.

While much technology has changed over the decades, variations of combinatorial antibody libraries are still a mainstay of drug discovery research. Commercialized throughout the 1990s, the promise of this method is now beginning to be realized—today with Benlysta®, tomorrow, Lerner predicts, with other life-saving drugs.

BEST OF LUCK TO YOU!

Re: ~Believe51~Diagnosed With Lupus!~
 

Lupus is rough. Fight the good fight!

Melanie

Re: ~Believe51~Diagnosed With Lupus!~
 

Marie,

I think finding an online support group such as ours may help you gain information and insight. I also suggest seeking out some alternative treatments/supplements to assist in your treatment. I know with time and treatment you will rally, but the suffering stinks and I feel for you. Hang in their, Mighty Acorn. The Oak would expect nothing less of you.