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Health Notes: Check for a free memory screening near you on Nov. 17 - Daily Press

Health Notes: Check for a free memory screening near you on Nov. 17
Daily Press
Lupus Foundation of Virginia Inc., Williamsburg/Peninsula Chapter meets at 10:15 am on Nov. 14 at the James City County Library on Croaker Road. ...

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Symptoms of Lupus?

Ever since I’ve been diagnosed with lupus, my dentist, cardiologist and ophthalmalogist have s

What to do...

Grrr….. so I hate the thought of cutting people out of my life. I want to say that first and f

Wendy Rodgers to ride in the 2010 Rose Parade increasing awareness for the ... - Liberty Vindicator

Wendy Rodgers to ride in the 2010 Rose Parade increasing awareness for the ...
Liberty Vindicator
Rodgers is a kidney recipient as a result of her battle with Lupus. Wendy is now 36, living in Torrence, Calif., volunteering her time as a public speaker ...

New treatment hope for lupus patients

Patients with the disease systemic lupus erythematosus currently have few treatment options, but a new treatment is showing great potential in late-stage testing and could reach the market within the next 18 months.

Paramount exec Gino Campagnola dies - Hollywood Reporter

Paramount exec Gino Campagnola dies
Hollywood Reporter
... and by his son, Justin. A memorial is being organized. In lieu of flowers, the family asks that contributions be made to the Lupus Foundation in Baltimore.

NAC for Systemic Lupus Erythematosus

The National Center for Complementary and Alternative Medicine at the NIH is funding a study at Upst

New Options for Treatment of RA and Lupus are Focus of Rheumatology Thought ... - Earthtimes (press release)

New Options for Treatment of RA and Lupus are Focus of Rheumatology Thought ...
Earthtimes (press release)
"Of all the diseases rheumatologists treat, lupus still has the highest unmet need," according to MedPredict president Jeffrey Berk. ...

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Welcome.

I am a 27 year old wife and mother of two, and now a Lupus patient. I am newly diagnosed as of Oct

MicroRNA’s Role in Interferon’s Contribution to Inflammation

Interferons (IFNs) are proteins produced by immune cells when the immune system is activated. They send different instructions to cells depending on the needs of the immune response; this can lead to cells making certain inflammatory proteins. IFNs communicate with the cells by linking up with receptor proteins along the cell surface, the way a key fits into a lock. This action sends a signal into the cell that eventually either turns on or turns off the process we recognize as inflammation.

There are a number of signals and switches along the communication pathways that control inflammation, leading to the production of interferons and the ways in which interferons communicate with inflammatory cells. A group of very small substances called micro-RNA (miRNA) are thought to help in the regulation of inflammation in several ways. One way may be by interfering in the process by which genes (the genetic blueprint for the body) are translated into actual proteins (the machinery of the body).

Read more.

Movin' and Groovin' - Guest blogger

I'm pleased to welcome guest blogger Suzanna Adams, Physical Therapist from the OSU (Ohio State University) Medical Center. Suzanna works in the Out-Patient Rehabilitation Services, and I recently asked for her two cents on physical therapy/exercise and lupus. Here's what she has to say - all great stuff!

Exercise and Lupus

Everybody wants to be fit/healthy/lose weight/look better/feel better/have less stress/be happier. People with fancy degrees have performed double-blind studies showing that exercise can achieve all those things and more. If you have lupus or another inflammatory disease, exercise has been shown to decrease painful joints, decrease susceptibility to fatigue, decrease inflammation, minimize function loss during flare-ups, as well as improve mood. Interested?

General rules:
1. If it hurts, don't do it. Seriously. It is rule #1 for a reason. If what you are doing is causing pain, then that activity is likely causing injury to your body. That will allow you to take 1 step
forward, to go 4 steps backward. Exercise can be hard or uncomfortable, but it should NOT be painful.

2. Do something you enjoy. Some psychotic people love to run marathons, most of us don't. Your chance of getting the benefits of exercise greatly increase if you actually do the exercise, which
greatly increases if the exercise is something that you enjoy. There are millions of options, you don't have to run with the psychos.

3. Always check with your doctor before starting an exercise program, especially if you have any heart or lung involvement.

Exercise:

1. Stretching exercises: Stretches can be uncomfortable, but they should never be painful. Here are some of my favorites that I recommend for most people 3 times per week. All stretches should be held for 30 seconds, done 2 times on each side:

a. Hamstring stretch: lay on your back, bring one leg up, hold behind your knee and try to straighten your knee. You should feel tightness behind your knee. You can also use a strap or towel around your foot to hold this stretch.

b. Single knee to chest: lay on your back, starting with both knees bent, feet flat on the floor/mat/bed, bring one knee to your chest and give it a hug.

c. Gastroc/Soleus stretch: stand facing a wall, place one foot back, keeping toes pointed toward the wall and back heel on the ground, lean toward wall.

d. Doorway stretch: standing in a doorway, raise both hands above head onto door jams, lean forward until stretch is felt across chest. You can also take yoga or other classes through the Arthritis Foundation.

2. Cardiovascular exercise: Everyone (that includes you) needs exercise at their target heart rate for 20-40 minutes, 3 times per week. Your target heart rate is between 60-80% of your theoretical maximum heart rate (roughly 220 minus your age). Try walking, swimming, bicycling, low-impact cardio machines at the gym (e.g. elliptical trainers), cross country skiing, aerobic dancing, roller blading, ice skating, whatever it takes to maintain that heart rate. Heart rate monitors are great for keeping you on target.

Strengthening exercise: You don't need fancy equipment. You can strengthen you legs by doing lunges, wall slides, squats, step-ups, heel raises or leg raises on a mat. You can strength your core by doing sit-ups, plank, or bird-dog exercises. You can strengthen your upper body by doing push-ups at a wall, bicep curls, or tricep presses.

Special Lupus concerns:
Corticosteroids: Another reason to hate them: Steroids can weaken tendons and ligaments. If you are on high-dose steroids or have used low-dose for a long time, be more cautious with strength training. BUT, steroids also can increase risk for osteoporosis, so you still need to
do some weight bearing and resistance exercises.

Fatigue: It will take a little practice to see how much exercise your body can tolerate. A good rule of thumb is: You should feel as good 2 hours after you stop exercising as you felt before you started exercising.

Flare-ups: Limit your cardiovascular and strength training, but continue range of motion exercises. Don't take more than 2 days off in a row.

***
Thanks again, Suzanna. From one college roomie to another, I appreciate you sharing your expertise with us!

Zeta Phi Beta holds date auction - The Daily Collegian Online

Zeta Phi Beta holds date auction
The Daily Collegian Online
The event raised money for the Lupus Foundation. By Somer Wiggins Men took their shirts off and danced on stage for the women bidding on them at Thursday ...
Fraternity and multicultural sorority hold joint canned food driveUniversity of Pittsburgh The Pitt News

all 2 news articles »

Autumn Blessings

Despite all the crazy and sometimes crappy things that happen, I am able to count my blessings. The

Long, Busy Day

Today was a pretty long day for me.

It started off early this morning. I got up just before 7am and got ready to go out. I went to a friend's house to get my hair done. That whole process took about 3.5-4 hours. I was lucky enough to have my Dad pick me up and drop me off at the subway. I also had a dialysis clinic appointment today.

I got to the hospital early, so I took the time to greet the nurses in my old in-centre dialysis unit. I was happy to see everyone and they were happy to see me. It's sad going back to that clinic, because I know that they're going to tell me about another person in the unit who has passed on. Today was no different.

After my visit, I headed back upstairs for my actual appointment. I waited for a few moments before being greeted by Fabian, one of the tech guys. He informed me of a new system/form they were implementing whereby I would have to fill out a document about my machine. The questions are yes/no questions, basically asking me the general questions like am I disinfecting my machine, am I doing the citric acid rinse, am I testing for bleach after disinfecting, etc.

I was a bit surprised (and I won't lie, disappointed) when a doctor other than my nephrologist called me in, when I saw my doctor just a few moments before. I knew that meant they were putting me in with a fellow. This means a billion questions when it is already 2:10pm and I have to get out of here, get back on the subway, and take another bus in order to get to school before 3pm.

I didn't get asked too many questions which is great. He did, however, question some of the medications that I'm taking (like cellcept), and also some that I truly felt that he felt I should be taking (like magnesium). I kind of get annoyed when they do that. My doctor(s) of a trillion years know what medications I'm on, and if they're happy at where I'm at, don't go and muck things up by taking things away-throwing extra things in. I already went through that during my pre-dialysis years. One doctor's quest to be a superhero and change all of my medications resulted in a serious flare and subsequent dialysis (dialysis that I feel didn't have to begin at least for another several months if not for that particular doctor). But, I digress.

He discussed my Feritin. My feritin was too high for his liking. Ah well, it hasn't changed in several months and I am just fine.

My real doctor came in and this fellow recited my history to my doctor. I left with a prescription for Losec (omeprazole).

After that, I hurried on down to school for business communications class. The prof handed back our mid-terms. She totally embarassed me by announcing that I got the highest mark in the class!! Why would she do that!!? I got 49.5/50. Why couldn't she just give me that extra .5 of a mark!!? I lost .5 because I accidentally put a question mark somewhere that should have been a period. Bah! Oh well, 49.5 is a-ok by me!

Classed ended at about quarter to 6pm, so I walked to the subway, which is about a 10 minute walk, and took the subway and the bus home.

Gah! I'm tired!

Could we be on the verge of a new drug to treat lupus?

Systemic lupus is the most common form of the autoimmune disease, lupus , which afflicts about five million people worldwide and causes a slew of symptoms including fever, pain and swelling.

Hit the Road Muscle Aches

I’ve learned to be creative finding ways to reduce my pain level and it’s not been easy. I have a rice pack that I warm up numerous days during the day. Sure I could use a heating pad, but the rice pack offers moist heat which seems to sooth my muscles at least temporarily. If [...]

Life Can Be a Royal Pain in the Moon

It’s been a rollercoaster of a week for me. The computers have been a royal pain between the Linksys not working and the cable modem lights turning off and on. I think I have that issue fixed. Some days computers are more of a pain than they’re worth. Our cables been a royal pain for [...]

Making Connections (Part One)

“My life has a great set of characters; I just haven’t figured out the plot.” ~Ashleigh Brilliant I recently had the opportunity to work with a client in a coaching capacity, unrelated to lupus. She called me to help her objectively evaluate what her priorities are and chunk them into an achievable action plan that she [...]

Recognizing Lupus Symptoms

Recognizing lupus symptoms isn't easy for the average person. Lupus symptoms are difficult to discern from other diseases.

Interview with Humorist Wanda Argersinger, Executive Director for the Lupus Support Network

Wanda is a writer, humorist, motivational speaker, and founder of L-Bow - she also has lupus.

BENLYSTAa Successful In Second Pivotal Clinical Trial

Human Genome Sciences and GlaxoSmithKline announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA for treating systemic lupus.

LFA's "Social Wellness, Making Connections and Helping Others Understand Lupus" Webchat to be Held Wednesday, November 11 at 3 p.m. Eastern

Reminder -- the Lupus Foundation of America's webchat is next Wednesday afternoon, November 11, at 3 p.m. Eastern Time.

The LFA welcomes Ms. Cindy Coney, who will serve as the guest expert for the "Social Wellness, Making Connections and Helping Others Understand What You Go through with Lupus" webchat.

This is your opportunity to ask questions and learn from an expert. Ms. Coney is a nationally recognized speaker and educator. She holds a Master’s Degree in Educational Leadership and is a Certified Prevention Professional. For over 25 years, Cindy led a non-profit agency which developed health and prevention programs. Under her leadership, the agency grew from a locally based non-profit to a nationally recognized organization. The programs received the highest designation possible by the federal government and were implemented in more than 3,500 school systems across the country.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon, November 11. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read LFA's previous chat transcripts.

Reminder: LFA is hosting a second webchat on Monday, November 23, 2009. Dr. Sam Lim will discuss Medication Adherence.

New lupus drug Benlysta passes second clinical trial

The LA Times is reporting that Benlysta, a new drug designed to treat lupus, has passed an important second clinical trial. The drug's maker, Human Genome Sciences, plans to apply for FDA approval next year. If approved, Benlysta will be the first new treatment for lupus in 50 years.

In the clinical trial, 43.2% of patients who took Benlysta in addition to their usual treatment saw their symptoms reduced, compared to 33.8% of people on a placebo.

New lupus drug Benlysta passes second clinical trial originally appeared on About.com Lupus on Wednesday, November 4th, 2009 at 13:10:25.

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Benlysta update - good news all around!

Here's the latest in lupus drug research news:

Human Genome Sciences announced that its drug BENLYSTA™ (belimumab) met its primary endpoint in BLISS-76, the second and final Phase 3 trial in seropositive patients with systemic lupus erythematosus (SLE).

BENLYSTA is the first drug for lupus to reach Phase 3 and achieve positive results, in the largest randomized placebo-controlled clinical trials ever completed in patients with SLE. Positive results from the first BENLYSTA trial, BLISS-52, were announced in July. The data represent an important milestone for the lupus community, which has not seen a new treatment for lupus approved by regulatory authorities in more than 50 years.

HGS and GlaxoSmithKline plan to file marketing applications in the United States, Europe and other regions for BENLYSTA for the treatment of SLE in the first half of 2010.

Here's a longer version of the same, if you're interested in the gory details:

POSITIVE CLINICAL TRIALS JUST ANNOUNCED
Alliance for Lupus Research

Findings from the BLISS-76 Phase III clinical trial of BENLYSTA™ (belimumab) represent an important milestone in the development of new therapeutic options for patients with systemic lupus erythematosus

Human Genome Sciences (HGS) and their partner GlaxoSmithKline (GSK) released very encouraging new results from a second Phase III trial, BLISS-76, of its investigational lupus drug BENLYSTA™ (belimumab). In the study, BENLYSTA met its primary efficacy endpoint of superiority versus placebo after 52 weeks.

BENLYSTA also met the primary endpoint in the first of the two pivotal Phase III trials, BLISS-52. The Phase III development program for BENLYSTA is the largest clinical trial program ever conducted in lupus patients.

“The Alliance for Lupus Research (ALR) is thrilled with the successful completion of the second Phase III study of a potential new lupus drug,” explains Barbara Boyts, President of the Alliance for Lupus Research. “The Bliss-76 trial represents a critical step forward for people with lupus everywhere. Our hope is that the success of this trial will support the FDA approval of the first new drug for lupus in 50 years.”

BENLYSTA specifically recognizes and inhibits the biological activity of B-lymphocyte stimulator, or BLyS®, a naturally occurring protein that promotes the development of B-lymphocyte cells into mature plasma cells in systemic lupus erythematosus. Plasma cells are a type of white blood cell that normally produces antibodies, an important component of the body’s defense against infection. In autoimmune diseases such as lupus, elevated levels of BLyS are believed to contribute to the production of auto-antibodies that attack and destroy the body’s own healthy tissues, causing the inflammation that is a characteristic of the disease. Previous clinical studies have suggested that BENLYSTA can reduce auto-antibody levels. Now, the results of the Phase III trials suggest that BENLYSTA can also reduce disease activity.

The BLISS-76 study is ongoing for 24 more weeks. Additional trial data will be available at the conclusion of the study period. HGS and GSK are expected to submit marketing applications for regulatory approval in the United States, Europe and other regions in the first half of 2010. If approved, BENLYSTA will be the first in a new class of drugs called BLyS-specific inhibitors.

More Than 10 Years of Significant Research Supported

The Alliance for Lupus Research supported some of the important basic and translational research on the molecule targeted by BENLYSTA, BLyS, also called B cell-activating factor (BAFF). Research conducted by Dr. William Stohl at the University of Southern California and Dr. Robert Carter, currently the Deputy Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, established BLyS/BAFF as a potential therapeutic target for patients with systemic lupus erythematosus. Their research, funded through the ALR Target Identification in Lupus Program, along with research by many other committed immunologists and lupus investigators, set the stage for clinical development programs and clinical trials that are now resulting in documented decreases in lupus disease activity. The ALR has funded more than five million dollars in B-cell research in the past ten years.

“The Alliance for Lupus Research remains committed to supporting the important research that will ultimately lead to a detailed understanding of this most complex autoimmune disease,” says Mary K. Crow, M.D., the Alliance for Lupus Research’s Scientific Advisory Board Chair. “The diverse research funding programs developed by the Organization, including its International Systemic Lupus Erythematosus Genetics Consortium (SLEGEN) and its Functional Genomics and Genetic Pathways grants, along with the Target Identification in Lupus grants, are helping to identify other drug targets like BLyS that may ultimately contribute to the development of additional targeted therapies. These research efforts, along with the steadfast commitment of lupus patients who participate in important clinical trials, will result in new therapeutic options that lead to better patient outcomes.”

The Alliance for Lupus Research is the world’s largest charitable funder of lupus research. One hundred percent of all donations to the Organization support innovative medical research programs focused on preventing, treating and curing systemic lupus erythematosus or lupus, as the Board of Directors funds all administrative and fundraising expenses.

Smokers With Common Autoimmune Disorder At Higher Risk For Skin Damage

As if there weren't enough reasons to stop smoking, a team of researchers at the Research Institute of the McGill University Health Centre (RI-MUHC) have just found another. A study led by Dr. Christian A Pineau, Co-Director of the Lupus and Vasculitis clinic at the MUHC, has clearly linked skin damage and rashes to smoking in people with systemic lupus erythematosus (SLE). The study was published in a recent issue of the Journal of Rheumatology.

What’s Your Holiday Plans This Year?

The holidays are extremely stressful for me so I don’t cook the meal. I don’t like being so exhausted I cannot walk across the room at times. I cannot handle the stress of the cooking, cleaning and just dealing with people in general. We usually take a couple of dishes for the holiday. This [...]

Wordless Wednesday: Pumpkin Time

Our pumpkin that we used a strobe light inside instead of a candle. We didn’t want to start a fire if we left it unattended. I just washed off the light when Halloween was over.

Ahhh...much better!

Today is a much better day for me than yesterday.

I was stresed and sad yesterday for a number of reasons. I just knew that if one more minor thing happened to me...if a fly landed on my keyboard as I typed through teary eyes..I was bound to have a total and complete breakdown if uncontrollable scream-crying. Luckily it did not get that far.

I was afraid to go to school. I had written a test 2 weeks prior and I was to get it back today. You ever have a test where you study and you study, but the material never seems to settle in your brain? That is what I was experiencing for this test. I studied and I studied. No dice. Simply just not as comfortable as I felt I should be.

I went in, wrote the test, and faked a happy smile the rest of that day.

So today, I arrived in class a bit late. Everyone else had already gotten their tests back. Mine was in a pile amongst others. I saw my test - 61/80, plus 2 extra marks would be added on later due to a computer error. So...you're saying I got 79% on a test I was convinced I failed? WOO HOO!

I do that a lot. I think I've done poorly on a test when, in fact, I've done well. I'm very happy with a B+.

Then today, my brother sent me a text message informing me that our mutual cell phone company was giving him grief over a phone upgrade he wanted to do. They said he'd have to pay $449 + an extra $35 to get this phone because he still has about 10 months left in his 3 year contract. Whaaa?? A new subscriber would get this same phone for $299 flat! He spoke to different levels of representatives, but none were willing to budge.

Since I work for a bank, I am able to get a corporate plan. I spoke to my corporate representative and he told me that if I added my brother's account to my own, he would not only get a discounted monthly price plan, but he'd also be able to get his phone for $299 (and no extra fee!)

Hey, this is my big brother we're talking about here. He's one of the best men I know. He's there for me 24/7. He taught me how to play video games, but even more I enjoyed watching him play as much as he enjoyed playing games when we were both younger. He allowed me, his younger sister, to hang out/bike ride, etc with HIS friends! What kind of brother does that? I'll tell you. An awesome one.

So I promptly text'd my brother to see if this was a good arrangement for him as it was a good arrangement for me. So, we went ahead with it..and now we're just waiting for his new blackberry to arrive. I'm happy because it saves my brother a whole heap of money not only on the phone, but also on the monthly plan. Just a mere fraction of what he does and has done for me since I was born, but it still made me feel great. I wish we had done it before so we could have saved him some money on his monthly plan in the past.

I'm a happy girl today. And thank you to those who read, sympathize, and comment!

--Yup, I got the virtual hug from Miriam via DSEN. Thank you too!

Promise Of A New Lupus Treatment Is A Groundbreaking Achievement

Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) today announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S.

Lupus Research Institute: Benlysta(TM) Trial Results In An Historic Research Breakthrough And Victory For People With Lupus

The Lupus Research Institute (LRI) and its National Coalition of state and local lupus organizations congratulate Human Genome Sciences (HGS) and GlaxoSmithKline for achieving an historical landmark - the second positive phase 3 clinical trial of Benlysta (belimumab), the first successfully tested new drug developed specifically for people with systemic lupus. "This is a pivotal moment in lupus research," said Margaret G.

BENLYSTA™ Successful In Second Pivotal Clinical Trial

Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S.

Again?

I feel like I write a lot of "just one of those days" posts.

My day was fine. I went to work today. Work was fine. Then, I went to school. School was also fine. Then, I came home. I was fine.

I sat in bed and looked to the right. I saw my dialysis machine. I could feel the tears building up in my eyes.

I see my machine everyday. In fact, I sometimes feel happy to see it, knowing that I do not have to go to the hospital frequently just to do dialysis. Other times, like today, I'm like...why do I even have to think this to myself? Why do I even have to be "happy" about not going to the hospital?

Most days, I'm ok. Other days, it's like...Im here, going to school and working part time, just trying to get by. Everyone else I know in school is doing that too...but they're not dealing with endless boxes of dialysis supplies, dialysis, doctor's appointments, kidney pagers, etc.

I'm sorry, but the whole thing just sucks sometimes.

Facebook, Twitter, and MySpace Oh My! ButYouDontLookSick.com on the web!

We love being connected with our readers! Since we have added those "handy dandy" features at the bottom of every article, we have noticed our readers have shared our articles, posted them on their personal profiles and more. We can not thank you enough for sharing this site with your friends and family. Even though we hope you come to ButYouDontLookSick.com every day for our new articles and tips.. we know there are other places on the web where you guys like to hang out. Social Networking is more and more popular and we like to stay connected! We can use technology as a tool to help each other and build a community.

Click to read more ...

Human Genome Sciences and GlaxoSmithKline Announce Positive Results in Second of Two Phase 3 Trials of Benlysta™ in Lupus

BENLYSTA (belimumab) 10 mg/kg plus standard of care met its primary efficacy endpoint by achieving a statistically significant improvement in patient response rate versus placebo plus standard of care at Week 52 in BLISS-76

Primary efficacy endpoint met in two pivotal Phase 3 trials, as specified by Special Protocol Assessment agreement with FDA

What are customers saying about the book "Despite Lupus"?

Find out by clicking on our new and improved "Reviews and Feedback" menu category at the top of the website. You'll still find reviews from doctors, LFA, ALR (Alliance for Lupus Research), and a Success magazine writer...but scroll down and you'll find dozens of comments from readers just like you! People trying to make it through life with lupus - and doing a darn good job of it.

To those of you who have taken the time to tell me what you think of the book - thank you! I love hearing from you, and I'm sure others will appreciate reading your feedback. Your comments have certainly inspired me, and I'm so pleased that you have connected with what I've written.

And if you haven't taken a moment to let me know what you think about "Despite Lupus", feel free to do so. You can email me, or post your comments on the book's Amazon. com page. Just scroll down to "Create Your Own Review" on Amazon. com and start typing. Any comments that might help others figure out if this is the right book for them - I'm all for it!

Don't forget to check out our updated "Great Doctors" menu category, too. We've added Nephrology to the list, and updated a listing or two. Have a great doc to add to the mix? Feel free to email me. I'm all ears!

Benlysta™ trial results in an historic research breakthrough and victory for people with lupus

Second successful phase III trial points to the first new lupus treatment in over 50 years

New York, NY (November 2, 2009) -- The Lupus Research Institute (LRI) and its National Coalition of state and local lupus organizations congratulate Human Genome Sciences (HGS) and GlaxoSmithKline for achieving an historical landmark - the second positive phase 3 clinical trial of Benlysta (belimumab), the first successfully tested new drug developed specifically for people with systemic lupus.

Lupus Patients Who Receive Kidney Transplants Rarely Develop Lupus Nephritis

Individuals with a history of lupus who receive a kidney transplant rarely develop the serious inflammatory condition lupus nephritis in their new organ, according to a paper being presented at the American Society of Nephrology's 42nd Annual Meeting and Scientific Exposition in San Diego, CA. The findings indicate that having lupus should not keep individuals from seeking a kidney transplant if they need one.

Promise of a New Lupus Treatment is a Groundbreaking Achievement

BENLYSTA™ Successful in Second Pivotal Clinical Trial

Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) today announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S. Food and Drug Administration (FDA).

Both trials demonstrate that treatment with BENLYSTA plus standard of care was superior to that of placebo (inactive agent) plus standard of care. BENLYSTA significantly reduced disease activity. If approved by the FDA, BENLYSTA would be the first drug ever developed and approved specifically for the treatment of lupus.

Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA) issued the following statement.

"We are truly excited to receive this groundbreaking news! Individuals with lupus and their families have waited more than 50 years to hear that it is possible to develop therapies that control the disease. We believe that this is a significant first step in developing the full arsenal of therapies and personalized treatment lupus requires.

"Conducting clinical trials in lupus has been extremely difficult due to many factors including the heterogeneity of the disease, the selection of appropriate clinical trial endpoints, and the confounding role of required background medications given to clinical trial participants. Human Genome Sciences and GlaxoSmithKline have proven that these barriers, while formidable, can be overcome.

"For decades the entire lupus research community has worked hard to better understand the causes and consequences of the disease. The fruits of that labor are starting to emerge. However, now is not the time for complacency. We must band together for lupus and continue to capitalize on the decades of research made possible through the efforts of the many dedicated researchers, physicians, people with lupus, and advocates.

"This announcement by HGS and GSK and the Overcoming Barriers to Drug Development in Lupus report, commissioned by the Lupus Foundation of America to outline recommendations on ways to overcome the barriers to lupus research, combine to serve as a call to action for a national coordinated effort to accelerate the pace of discovery, to develop more tolerable and effective treatments, and to ultimately find a cure for this perilous disease.

"We congratulate HGS and GSK on reaching this important milestone in lupus research and in the development of new therapies for lupus. We also extend our appreciation to the researchers and study volunteers who made this achievement possible: the physicians who have passionately committed to researching this disease, and the companies that continue to invest in finding new and necessary treatments for this devastating disease."

The next step in the process is for HGS and GSK to submit marketing applications in the United States, Europe and other regions during the first half of 2010. The LFA will closely follow this process, and continue to keep its constituents apprised of developments.

Related Information

Read Official Press Release from Human Genome Sciences and GlaxoSmithKline on Positive Results in Second of Two Phase 3 Trials of BENLYSTA™ in Systemic Lupus Erythematosus

Participate in the BENLYSTA Research Update Call on Monday, November 30, 2009

Frequently Asked Questions regarding BENLYSTA™ (Formerly Lymphostat-B)

Read the July 20, 2009 press release "BENLYSTA™ Successful in First of Two Pivotal Clinical Trials"

National Heath Awareness Months List

Every month usually has an "awareness" campaign associated with it. A time of year, when during that month or week that organization combines their efforts to get information out to the public. For example October is Lupus Awareness Month and also Breast Cancer Awareness. You might notice more public service advertisments, or local fundraising walks in your area during these months. I thought it was interesting and important to have 1 list with all the national health awareness months. I have listed what I could find below. It is so important for all patients to support each other.

Click to read more ...

Home Phone Anyone?

A couple of years ago, I turned off my home phone and went to just my cell phone. It was a good decision since I’m not a high phone user. I checked into a few different companies, but I decided to go with the company with roll over minutes. Checking out Mozoot would have helped [...]

I can't believe reading week is over!

+I did manage to get some much needed rest, but rest does not necessarily equate to sleep. For the past while I've been having trouble falling asleep, even when I'm on my machine. I'm going to see my doctor on Thursday so it is something that I'll definitely need to discuss with him when I see him.

Yesterday I went to the movies with my friend. We saw the movie Good Hair. It's basically all the things black women go through to maintain their hair. It was all quite funny. Much of it applied to me...except for spending $1000 on a weave/hair piece. Not I, said the fly! I'd never spend that much money on stupid hair. Dumb!

After that, I caught up with a friend of mine and we went for sushi. I haven't seen him in about 5 years or so. It was great to catch up with him. I hope another 5 years won't pass before I see him again.

Yesterday I went to the pharmacy and was very annnoyed with the service. They had called my doctor to get a prescription refilled for me exactly a week earlier, so I went to pick it up. First, they had filled the prescription but couldn't find it. So, I had to wait for them to fill it again. Then, they told me that they were going to give me 25 days worth. What the heck is 25 days? Why not 30? They told me that was the amount my doctor had authorized. \

Lies.

So, I went to the bank across the street and stood in a 20 minute lineup to get some cash. When I went back to the pharmacy, much to my chagrin, they hadn't started filling my prescription. I stood there and I stood there for about 15 minutes. I got tired and sat down for another 15 minutes. Then, one of the pharmacy assistants walked by and says "Uh, your medication is ready." Why the heck didn't they tell me??

By now, there was a lineup of 3 people. Oh, this shouldn't take long, I thought. So I waited. The lady at the front of the line had asked for 3 months worth of medication so she wouldn't have to come back to fill her prescription every month. She told them this earlier in the morning to drop off the prescription. Much to HER chagrin, they only filled it for one month. So, they had to do it again. This took about 20 minutes. I was exhausted.

After they FINALLY finished up with her, the gentleman in front of me waited and waited only to find out that they did not know which medications he needed, even though his wife had called them in, as they were for her. Since he didn't have a cell phone and they didn't offer up a phone, he had to leave. What a waste of time!!

When all was said and done, I spent over an hour in that pharmacy. Ugh.

Anyhow, I'm going to go an "Fall Back" before I connect myself and go to sleep so that my clocks are all the right time when I wake up.

Lupus Research Institute Earns A+ from American Institute of Philanthropy

Only lupus organization designated a “Top Rated Charity” by national charity watchdog

Of the over 500 charities rated by the American Institute of Philanthropy (AIP) this year, the Lupus Research Institute (LRI) is the nation’s only lupus organization to meet the stringent standards for financial efficiency and accountability and win a spot on the “Top Rated Charity” list. The fiercely independent and nonprofit AIP helps donors make informed giving decisions.

Skinny pens – my new pet peeve

I have a renewed appreciation for Good Grip products. I’ve always known how handy they can be when my arthritic hands are throbbing and in pain, but now I’m thinking I should stick to the friendly-handled gadgets for good. I recently grabbed a smooth, super skinny, slippery pen out of my desk drawer and was shocked to find that my hands ached when I tried to write with it. It was practically useless! I’m not in a flare, and I haven’t had any symptom activity for months…but that pen was just too skinny. It took me right back to the days when wincing in pain while doing the simplest of hand motions was a regular occurrence. I don’t need any reminder of that, so you can imagine where that slip of a pen is now. Hasta la vista, senor stylo!

Looking for some good products to help you get some leverage, avoid slippage, or ease your grip? Check some of these handy tools from Boston Warehouse (a recommendation from a reader) or OXO.

Long Island Business News Honors Christine Miserandino Donato as a "Heathcare Hero"

Long Island Business News Honors Christine Miserandino Donato as a "Heathcare Hero"

Long Island Business News and Hofstra University have recognized Christine Miserandino Donato for her work on ButYouDontLookSick.com and with the Lupus Alliance of America - Long Island/ Queens affiliate.

Click to read more ...

Nominate the Lupus Foundation of America for “Best Non-Profit Use of Social Media” in Mashable's 2009 Open Web Awards

Mashable, in partnership with MOTOBLUR, is conducting the 3rd Annual Open Web Awards: Social Media Edition. The 2009 Open Web Awards is Mashable’s international online voting competition that covers major innovations in web technology and social media.

The Lupus Foundation of America (LFA) is participating, and would like to take the category of “Best Non-Profit Use of Social Media.” We need you and your friends and family to help us win!

How You Can Help

Once a day, every day between now and November 15, you and your family, friends, and coworkers can nominate the Lupus Foundation of America for “Best Non-Profit Use of Social Media.”

Submitting your nomination requires 4 easy steps:

Step 1: Visit http://openwebawards.com/
Step 2: Log in via Facebook or Twitter (if you have an account in both, please vote via both websites)
Step 3: Go to the first category (Brand / Startup / Company / Agency), and select “Best Non-Profit Use of Social Media” from the drop-down menu.
Step 4: Type in "Lupus Foundation of America" and Submit Your Nomination

Remember, you can vote once a day, every day, using both your Facebook and Twitter accounts.

The nominations period will last until midnight of November 15th.

The top 5 nominees in each category will then move on to the final voting round which will begin on November 18th and end on December 13th. Winners will be announced on December 15th.

Thank you for your support.

Educate yourself - help your doctor help you.

Here's a snippet from a great article my friend sent me from CNN Health. Click here to read the entire piece. It's a good one!
****

"Women's health problems doctors still miss"
By Harriet Brown, Health.com
October 26, 2009

Experts say more women than we know walk out of doctors' offices feeling that their symptoms haven't been taken seriously. They are told that their complaints are all in their heads or that everything will be fine if they would just stop worrying.

The truth: Women who know something's wrong but can't get the help they need often have an autoimmune disorder, which occurs when the immune system attacks itself. One in five Americans has one, and three-quarters of them (about 22 million) are women. Some women live with unbearable symptoms for 10 or 15 years before finally getting the right diagnosis and treatment.

"More than 40 percent of women eventually diagnosed with a serious autoimmune disease have basically been told by a doctor that they're just too concerned with their health or they're a hypochondriac," says Virginia Ladd, founder and executive director of the American Autoimmune Related Diseases Association.

What's the best way to avoid Price's fate [case study mentioned in article] and get help fast? Ladd and other health experts say you must educate and empower yourself by learning the names, risk factors, symptoms, and treatments for the seven most commonly misdiagnosed women's illnesses described here. Then push your physician to take you seriously.

***
The article goes on to describe seven illnesses in detail - Polycystic ovary syndrome, lupus, chronic fatigue syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis, and irritable bowel syndrome. All great information!

Seeking Men with Lupus 65+ Years Old to Participate in a Survey

This is a follow-up to our recent posting where we asked people with lupus to participate in a survey. The response so far has been very good.

Now, BioVid has asked us to help them specifically recruit men with lupus who are 65+ years of age for this same survey. If you, or someone you know, may be a potential candidate, please follow the instructions below.

Through November 9, BioVid Corp. -- a market research firm – is conducting a survey. Specifically, they want to survey people living with lupus about their experiences with, and attitudes toward, the management of some health conditions.

Anyone living in the United States is eligible to participate. BioVid is looking for men with lupus who are 65+ years of age to take part in this survey, which will take about 45 minutes to complete. For those selected to participate in the survey, there’s a $75 stipend.

If you are interested in participating, please contact Dusten Lorenz at dlorenz@biovid.com to begin the initial screening process.

Be careful where you enter your info!

This coming from the girl who works for a BANK!

On saturday night, i went online to purchase the UFC fight so I could watch it. Sure, it's pricey, but I really wanted to watch that particular fight card. So I googled "watch ufc yahoo". I clicked on the yahoo website and entered in my card information.

Little did I realize until it was too late that this wasn't even the yahoo website! Look at the picture i just posted. The website says "YAOOO" instead of "YAHOO"! How could I be so dumb to fall for this scam!
I called my credit card company immediately to inform them what had happened. They immediately shut my credit card down. I emailed the company to tell them what happened, but the response was some canned reponse telling me how to use their website, which was a website for accessing tv online, some obviously illegally. I responded again and told them that I had NO interest in their service!

When they responded again, they offered me a discount off of the membership price. What?? Didn't I just say that I didn't want this service?? They then went on to say that there was a strict 7 day policy, after which no refunds would be granted. If I still wanted a refund at this point, they would deduct 9.99 from the cost refunded to me for "administrative costs". What the??

I emailed back, more angrilly but calm, and told them that I had NO interest in there and to refund the FULL amount back! They responded again discussing their 7 day policy and the 9,99. They told me the 50% off was still open to me, and if I didn't want it to email back. How long was this back and forth business going to go on?

I finally called them today, and after much discussion, the lady finally agreed to refund my credit card. I'll keep an eye on it...and if I see the refund then I'll call my credit card company and inform them.

The name of the charge on my credit card is marketbill.com. The website I went to was liveyahoosports.info. I wish I had paid more attention and not have gotten myself into this nonsense! I'll report back if this company does refund me the FULL amount back, and also which steps I take if they don't!

ACR: Depression and CVD Linked in Patients with Lupus

PHILADELPHIA – For patients with systemic lupus erythematosus, depression further increases their already elevated risk for cardiovascular disease, researchers said here.

In these patients, depression was associated with a nearly four-fold greater risk of subclinical atherosclerosis (OR 3.85, 95% CI 1.37 to 10.87), Carol Greco, PhD, of the University of Pittsburgh, reported at the meeting of the American College of Rheumatology.

Read full article

Everything I thought I knew about going to the hospital. ( also known as do what you gotta do)

Unfortunately when you have a child with a chronic illness, you come to think of yourself as some sort of expert on the subject. It's not exactly a specialty that you dreamt of having, but one nonetheless that you take ownership of with some sense of pride.

Click to read more ...

Sometimes when it rains, you need to make rainbows! TEAM CHRISTINE raised $10,145 for the Lupus Walk

I am so happy to announce that TEAM CHRISTINE raised $10,145 for the Lupus Walk!!!! Thank you everyone for your donations and support! As, of now we are the top fundraising team for this walk as we have been for many years. What a great legacy and tradition. We still have some checks comin in-- so hopefully we can reach for that $10,000 goal. If not, we are SO proud of how much we raised and our continued positive spirit as a team. We couldn't do it without all of your support and donations!!

You can still donate here: http://www.firstgiving.com/cdonato

Sometimes when it rains, you need to make rainbows!

Unfortunatly, yesterday was a downpour in NY! We worried all week what we were going to do, and hoped the storm would shift. It didn't stop raining. I was just getting over a cold... and as we all know I have lupus. I didn't want to chance getting sick. It was hard to make the "smart and safe" call to not walk since my family has been walking in this event for 15 years. It is hard to be an adult sometimes. So last minute, right before the walk we quickly made phone calls and decided to have an impromptu "Happy Lupus Walk Day" party. We had over 30 people on our team, so we had to make calls, ask other people to make calls, we texted and emailed everyone. Frank I quickly cleaned the house, pulled together some brunch ideas, and the party began at 10am. That is the same time the walk would have started for us. The walk actually did still go on, rain or shine in the park.

Click to read more ...

Wandering Thoughts

I have been too busy lately and a lot of things happened in just a short span of time that somehow made me feel a bit chaotic. Don’t get me wrong I love the way things are happening in my life right now, I mean who would want to complain about my slow recovery from [...]

Blue Advantage

I had my check up with my rheumatologist last Monday and the first thing he said to me was “you look great” wow, that felt so good after almost a year of having a lupus flare hearing your doctor said that only means that things are finally getting better. I am delighted that even my [...]

Better Be Safe

Discussions about the health insurance are on fire these days. A lot of people take for granted the importance of having a health insurance because they don’t anticipate what happens when sickness comes. Being a lupus patient for almost eight years now, I have experienced and valued the importance of having a health insurance, it [...]

Purified Water

It’s been weeks since our country was badly hit by two strong typhoons that left Manila and the rest of Luzon devastated. I consider myself lucky and blessed that my family and loved-ones were spared with all the flooding but my heart goes out to the people whose house were destroyed and even the lives [...]

Genetic Link to Lupus

More Than a Dozen Different Genes May Play a Role in Causing Lupus

Oct. 19, 2009 – At least a dozen or more genes may help explain what causes lupus, according to two new studies.

Researchers have identified 12 genetic variants that are associated with an increased risk of systemic lupus erythematosus (SLE), the disease commonly referred to as lupus.

Read full article

A Shot in the Dark

A friend of mine recently reacted to a pneumonia vaccination and that led me to confirm my decision to NOT get the H1N1 and flu vaccines this year. Her reaction may have less to do with her R.A. and Lupus than the incorrect administering of the shot itself (yeah, I guess there is a ‘right [...]

Birthday Blues

Another day had passed me by… I really shouldn’t be feeling sad or anything like that for I am so blessed that I have no right to complain but I guess this is just one of those days that I’m having some hormonal imbalance again and my lupus anxiety is making me feel all sad and [...]

World Arthritis Day 2009!

Nothing brings home the challenges of stiff, achy joints and limited mobility quite like the dampness of a good Oregon winter. We’ve been fortunate here so far in not stepping into that season full boar yet, but we know it’s coming. Today, awareness is upon those daily challenges for people living with osteoarthritis and all the other [...]

North, to Seattle…go north, the walk is on!

A quick note for all of you who will be in the Seattle area on October 17th : The LFA Pacific NW Chapter will be hosting their annual Mad Hatter Walk N Roll for Lupus event on that day at Magnuson Park at Sandpoint Way. Step out to join your community – both the lupus community [...]

Babysteps…

We’ve been busy trying to find, organize, correct and place all of our information onto the new blog. Since we had to revamp everything – meaning we couldn’t just transfer information, we had to save it all and re-enter it! – things are going painfully slow. There is some information we lost – such as any [...]

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home is where the heart is...

Home is where the heart is...until you run out of money. We are facing foreclosure on our home that we have had for almost 10 years. I was very upset. We can sell it, but I don't want to sell it. Waiting for disability seems to be forever! How can anyone afford to wait for disability? We pay into it for all these years until we need it one day and it takes this long just to tell you no. I know I made several mistakes my life, but my life hasn't always been great to me. I am paying for my pain for not working. I'm going to lose my home. I can't make a partial payment, only a lump sum. I don't have a lump sum. I just want to save my home. How am I going to go on? What do I tell my family? Please God help me. Help me save my home. Anyone and everyone that reads this, please pray for me.

World Lupus Day is May 10th!! Help spread awareness!!

70

70, that is the magic number. The crappy number, the number I hate. That's the number of pounds I have gained from lyrica in 9 months. Now I will be the first to admit I don't make some of the best eating choices, but 70 pounds is a little much. The Lyrica Manufactors claim that weight gain is a small percentage of people taking it. Well it's not and the weight gain is crazy. I don't fit into any of my clothes and honestly if I have to by a bigger size pair of jeans I will ball my eyes out. I have never been this big and I refuse to go up a size, so for now I am SQUEEZING my butt into these jeans.

My rhuemy is taking me off the lyrica 100%, I am so happy. SHe's gonna put me on something else for a little while. I am also on strict instructions to use my lunch breaks to get fresh air.

I am in the midst of a flare, mainly cause I am not sleeping that well and my flares are associated with my hormones as well.

Other than all this crazy stuff, life continues to go on. I was blessed to get an email from a reader of this site. I didn't really know others followed it. She has Lupus and has dealt with some of the same situations I have. It was really neat to read her email (I actually read it twice). I love knowing I'm not alone and others have the same expierences. Fight for people to liste!!!
I started a twitter page where I am doing updates daily on my lupus stuff. You can follow me there at www.twitter.com/corilewis. I am going to find out if I can put a twitter feed on this site so the updates comr through daily.

So it's been a while...

Are you surprised?
I haven't really wanted to update this blog, for a couple for reasons. First, I'm tired of the same old stuff and writing it all down just reminds me of that stuff. And two, does anyone really read this blog? I found out the other day that at least one person does because they emailed me asking me if I was doing better. Bottom line, I'm the same.

One of the things I did do differently was I went to my primary care physican after having a whole day of pain in my lymph nodes being so bad my right arm was useless. He sent me in for a mammogram in hopes of looking at the tissue, muscle & lymph nodes all at one. That was two weeks ago and I still haven't heard from him. So I wait. I'm going through another bit of no sleep. I finally got a rx for a sleeping pill, but it has yet to work. I see my doctor next friday and I hope to get some answers.

The pill I started finally kicked in and from an antidepressent stand point it is the best drug I've ever had. but as far as pain management I could take it or leave it. I don't want to go back on the other cause I need/want to loose weight.

I hope this is a good update. Once I figure out Twitter I'm going to start posting an update every day, if not more, so you can follow me there. Also I'm on facebook and that is probably the best place to find me :-).

Here is a little joke I put on facebook a little while back.

Ok, for the last several months I have been annoyed and struggling with everything I have dealt with and when a doctor says "Sorry you have Lupus, I can't help you" it is the most annoying thing you can hear. So lately I've realized, I can blame so many things on Lupus.
(Please note, some of these are true, but some are mostly for my own amusement. I don't plan on affending, but, you never know).

--have chest pain? it's not a heart attack... it's Lupus
-- 4 hours in the ER, finally the doctor comes in. barely looks your way and doesn't even touch you... he's response " You have Lupus and Fibromaylgia, I don't know why your here, there is nothing I can do for you".
-- I've known you for years and I've forgotten your name.... sorry it's Lupus
-- Stubbed my toe and yelled out a bad word- that's definatly Lupus
-- Eye doctor says the viens in my eyes are very abnormal... oh wait she just notice you have Lupus!
-- Can't eat much cause anything can set off some nasty GI stuff- that is DEFINATLY lupus
-- Gained 50 pounds in 2 months? It's not what your eating it's the meds
-- Your friends think you are crazy- that's the meds- from Lupus
-- can't get your words out of your head and your speaking in a large group? oh pardon me have an incurrable disease that causes me to be on crappy drugs that make me dumb... it's LUPUS
-- did I call you a bad name? I'm sorry I have Lupus
-- Did I forget I borrowed $10.00? eerrr no really that's lupus
-- laughing uncontrolably at something really dumb? Sorry I have lupus and I'm hoping laughter will heal it.
-- did I burst into tears after laughing? That's the steriods that make me crazy emotional.
--Did I just smack you for no reason? Sorry Lupus causes uncontroable muscle spasms.
--It's 5:00 and I'm in my PJ's resting in bed- yup you guessed it Lupus
-- You heard me snoring? at my desk? are you sure? well, then sorry I have lupus and it can cause me to fall asleep unknowingly... and the fact that I'm curled up on the floor only means I fell out of my chair... I didn't curl up there in hopes of not being caught.
-- Oh that's not a candy jar on my desk, it's my pill box, hands off. Those happy pills are for me. DUH.

I hope to come up with more... more funny ones. I hope someone found this funny, if it's not funny to you sorry, my humor is really bad cause of all the meds I'm on from Lupus.

just another day...

Just another Monday...isn't there a song with that phrase as a chorus? I have a full week ahead of me, also the fact that taxes are due Wednesday. I need to file for an extension, but I have yet to gather all my numbers together. Wonderful, huh? We have had some good and bad news. One of our cars was hit and will probably be "totaled" I'm not too sure if that is good news at all. But now we are down to one car. It was just a long weekend. Easter: our annual egg hunt was successful and both dogs seemed full afterwards. Our older dog was slow on the egg hunt this year, hopefully it doesn't mean his time is limited, right? We did watch Marley & Me and my daughter cried at the end. Everything was due to natural causes and it wasn't like something tragic happened. My daughter played for two teams this past weekend. She played for the freshman team and the JV team. Tuesday there are two games, but one is far away and one is at home. I'm not sure which one she will play and if she will skip her symphony practice. Everything is kind of up in the air right at this moment. My daughter is getting a used clarinet from her symphony. It is such a blessing because we have needed one for such a long time now.

World Lupus Day is May 10th!! Help spread awareness!!

situations

I had a big evening where I was helping an organization with a dinner. Last week I was able to help with a wedding and I was fine. It was very different this time. I didn't take my afternoon medication because I forgot to do so. I got home kind of late and took what I thought I missed. I couldn't find the stash of medication for the day. It was a very long evening where I felt scared and didn't want my husband to go anywhere. It had a tingling feeling about it too. I felt like I was a bit bewildered. Sunday, I didn't wake at all. Good thing my daughter knew to give me medication. She said that I didn't wake up that she propped me up and put meds in my mouth and gave me something to drink. Poor thing. She stayed with me the whole day as I wouldn't wake. One of our dogs was just going nuts and driving her nuts. She knew that was a bad sign. My husband finally came home and brought food. I guess I ate and went back to sleep. At one point, I had peanut butter in my mouth just sitting all day as I was sleeping, eww, huh? I guess I wanted to share this story because I'm ever so grateful to my daughter, who takes care of me.

World Lupus Day is May 10th!! Help spread awareness!!

spring time...

Spring is in the air. The official first day of spring has past and now we are in the midst of snow, ugh. Some of the things we love about living in Colorado. I guess travelling and coming home to it is very different than if I was home and it just snowed. I have to do a ton of things since I've been gone. We have no groceries is the first thing that I have to jump on. Since I have been home all I have done is sleep. I was so exhausted that I slept for three days through. I don't even think I ate during those three days, but it felt wonderful. My body definitely needed it.

During the spring my daughter got to meet my very old grandma. I was very happy to see my grandma. She lives so far away, yet she is still very independent. I miss her so quickly after we visit her. I just can't believe the love I feel for my grandma that it hurts. I have asked her to move in with us, but I know the different climate would be difficult. Plus, we live in a two-story house, but there is a room downstairs that I would have to move the doggies out of and insulate it better so she won't freeze in it. It is all exterior walls so it is almost like the room is outside of the whole house so the temperature in that room isn't great. I would be so selfish to ask her as all of her friends are where she lives right now.

World Lupus Day is May 10th!! Help spread awareness!!

Husband

What is a husband? Besides being the person you are supposed to be sharing your life with? My husband is hard to tell. He can be so loving, but other times I wonder. I wonder if he really loves me. Love is so difficult to understand. We have been married for almost 15 years and we are still trying to figure out the wrinkles in our marriage. One day, moment, second, we are okay, then it could change in the matter of a snap. Depending on attitude and mood.

World Lupus Day is May 10th!! Help spread awareness!!

March

It looks as if my updates are monthly, but I guess that’s better than none. There isn’t a lot to update you on, just the same old stuff. I am hoping the new medication kicks in soon. I am in intense pain. The breaking point was when I couldn’t quilt on my machine last week. My doctor has upped my pain medication, so that is taking the edge off, but popping pills is not always the first thing I think of. The exhaustion is overwhelming. There is so much to do in life and my wonderful husband has had to pick up a LOT of the slack, which makes me feel guilty (he doesn’t make me feel guilty, it’s just me). Josiah has been great, we are coming up with things to do together that I can do while resting like reading or puzzles. I have been teaching him how to play Sudoku and he loves it. It’s fun to do things like that together. I will update when/if the meds start working. I need to get back to life.

Riquent No Longer a Possibility

Earlier this month, La Jolla Pharmaceutical company halted the clinical trial of its possible lupus treatment drug Riquent. It was hoped the drug would stave off episodes of kidney inflammation caused by lupus.

An independent monitoring board called use of the drug “futile” after reviewing preliminary trial data. No new drug for lupus has been approved in 50 years.

There is just the smallest glimmer of hope, however, since La Jolla will have a chance to review the trial data and determine if its worth arguing against the monitoring board’s ruling.

Among lupus patients, La Jolla was considered “the little engine that could,” since Riquent is the only drug in the small company’s arsenal. Now that clinical trials have stopped, patients will have to look toward the next wave of possible treatment.

Riquent No Longer a Possibility originally appeared on About.com Lupus on Thursday, February 26th, 2009 at 16:51:09.

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Life is so interesting. The sleep didn’t get better right away, as a matter of fact it got to the point of where I went two full nights with no sleep. By Sunday afternoon I was so out of it and I started to become sick with a cold and had all the signs of having the start of a Lupus flare…
So I have slept pretty good, in the last week, mainly cause of Nyquil.
This flare seems to be a big one, it seems to have a lot of symptoms, some aren’t too bad, but others are painful. My lymph nodes have swelled back up and they are so painful. So back to square one.

Other than all this fun, life is pretty normal. I work at trying to take it easy but that doesn’t always work. David has now caught the cold I got, so I am waiting for it to come back my way .

What's Your Type?

Today we'd like to take a moment to welcome all of those women and men who have been newly diagnosed, or know someone who has been newly diagnosed, with lupus.

Today we’re asking the question, what type of lupus do you have? And more importantly, did you know that there was more than one type?

Lupus takes on several forms and can affect any part of the body, but it most commonly attacks the skin, joints, the heart, lungs, blood, kidneys and brain. So what are the various types?

They are:

These are the most common forms, but there are other forms as well. See something missing? Let me know at lupus.guide@about.com.

What's Your Type? originally appeared on About.com Lupus on Sunday, February 15th, 2009 at 12:00:34.

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Just the FAQs

If you’ve been newly diagnosed with lupus, or have lived with it for some time, you may have dozens of questions related to the disease. In an effort to collect as many of those questions as we can, provide some short answers, and then link to more in-depth information, we have launched this Frequently Asked Questions page. Here you will discover questions that have been asked, with a link to provided answers.

If you have questions that are not covered in this document, please e-mail me at lupus.guide@about.com. We hope to add to this page regularly, and welcome any and all questions you might have.

Just the FAQs originally appeared on About.com Lupus on Thursday, February 12th, 2009 at 12:00:37.

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Research Studying Why Therapy Works for Some, Not Others

Interesting news: new lupus research will focus on why some therapies work well for some people with lupus, but not others.

The focus of the research study, from the University of Rochester Medical Center in Rochester, N.Y., is on B-cells. B-cells are considered “key combat-ready immune cells.” B-cells are also often responsible for manufacturing auto-antibodies. The research should also open up the way the immune system works and mechanisms behind lupus.

Researchers are specifically looking at how bone marrow produces B-cells, and what quality control checkpoints it imposes to ensure that only healthy cells are released into the bloodstream.

This quality control system breaks down in lupus patients, and B-cells produce auto-antibodies and attack the patient's own body. This leads to the myriad symptoms and complications lupus patients suffer, including inflammation and damage to joints, skin, and, in some cases, the heart, kidneys and brain.

One treatment is known as "B-cell depletion therapy.” This therapy reduces the number of B-cells in the patient's bloodstream. It was successful for some – and of those, the success was quite noticeable. Now study specialists are trying to determine why this therapy works so remarkably for some, but not others.

Discovering why should help create and direct future therapies for lupus patients.

Research Studying Why Therapy Works for Some, Not Others originally appeared on About.com Lupus on Tuesday, February 10th, 2009 at 22:52:45.

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Life has been incredibly overwhelming lately. Not in a particularly bad way or a good way, it just seems crazy. I went to my doctor last week to ask about the new Fibromyalgia drug. The one I’m on now has helped me gain a lot of weight in a short period of time and I really need to lose it since it is affecting my ankles. So the new drug isn’t out yet, but there is another drug I could try. So I am weaning off the first one & starting the second one. The first one seems to working its way out of my system fairly quickly and the second one is taking it’s time working into my system. I will be glad when this is over, and I really hope it works! But in the meantime I am being reminded of how I felt a year ago. I really don’t know how I survived all this pain and lack of sleep.
So that kind of catches you up to my health stuff. I am sleeping 2-3 hours a night- if I’m lucky. David & I bought a new mattress that we set up tonight- so I’m hoping that helps a little. It’s much better than the one we had.

Some People Suck

This month my son's class are going to science camp. I signed up to go. I've been looking forward to this. A LOT. Unfortunately, the insurance company decided to finally cooperate and I scheduled to have the scope of my esophagus and stomach done. The day after they leave. So I can't go.

I talked to the teacher on Monday and she was very understanding. Unfortunately some of the parents aren't. Some of the parents know whats going on. The ones that know are understanding. The ones that don't are very upset that I've backed out. I had one woman tell me I needed to just reschedule that my kids are more important.

Yeah my kids are more important, however I think me trying to do whatever I can to stay as healthy as long as I can is more important than a freaking camping trip.

Its not like there aren't enough parents going. There are more than enough.

Limits

I have 3 kids. 3 kids that don't understand that 2 years ago mommy could go outside and play with them, and now I have days I can hardly walk.

These same 3 kids are also keeping me from setting limits, or using them to get out of doing things.

Last weekend we spend all day Sunday with some friends of ours and their kids. Lots of walking, standing, and sun.

I had all sorts of excuses for getting out of going, but the kids were so excited and I couldn't bring myself to use them.

I spent 2 days recovering from it, but thats a price I am learning to pay.

I can't let the pain or the fatigue from allowing me to live my life and be a cool mom to my kids.

My sweet little boy

Last night Robbie gave me this necklace. He told me he saw it at Target and asked D if he could get it for me. (a butterfly is used on many lupus websites, posters, and such).

He told me he knows it won't make me better, but it might make me feel better.

Then he asked me what it feels like to have lupus. He then told me he wanted the truth and not to lie to me.

I tried to find a way to explain it that he'd understand, but wouldn't be able to over think it and make it sound worse than what it is.

I told him to remember the last time he bruised his knee. I told him that all of my joints feel like that. My ankles, my knees, my elbows, and my shoulders. He asked about my neck. I told him that it feels weird. That it hurts and showed him where. I told him it kind of feels like when his sister punch his arm, its just in my neck. Then he asked why I turn red. I told him that's from the sun, that if he looks closely there's a lot of little blister type bumps on my arm. I asked him if he remembered when he had poison oak. I told him that it feels like that, but instead of being caused by a plant its caused by the sun. That's why I have long sleeves on most of the time, or an umbrella with me when we are outside.

I told him the medicines I'm on are helping me, even though it doesn't seem like it. Its just going to take a while for them to fully help me (most things I have read say a year or more). And that we are trying to find out whats going on with my neck. I told him that they may have to cut my neck open and remove one of the lymph nodes so they can find out whats going on. He thought that was kind of cool and asked if he could see the stitches when they do it.

He hadn't said anything, so I didn't realize that he was convinced I was going to die from this.

I think our conversation last night helped a lot. He seemed a bit more upbeat this morning and didn't seem like an act like I've noticed the past month or so.

MIA

Sorry about so long between postings. Between getting ready to move and then moving, life got a little hectic. Then we didn't have internet for over a month.

Now its going to take me a while to recover from all this.

Aug 27th I had a ct scan done of my chest. Both my regular doctor and my rheumy wanted to check the lymph nodes in my chest. Since the ones in my neck are so swollen and have been for months, they want to see what those look like.

My rheumy is talking about doing a biopsy no matter what the results from the scan say. UGH! I'm still seeing my rheumy from Southern CA because I haven't found one up here just yet. Plus I'm nervous switching doctors in the middle of all this.

I promise to update more often. Now that things are finally settling down I will have a bit more time.

The Starr Bar

My sister sent me this. I'm trying to pass it on to everyone I know.

As many of you know, I was diagnosed with Lupus and Scleroderma in March.

The Starr Bar is made by Body Balms. 50% of every Starr Bar purchased will go to The Scleroderma Foundation.

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