Join me in a lupus clinical trial

There is a lupus clinical trial that is recruiting applicants now. We all know that lupus is a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.

Many people think of the inconvenient and bothersome side effects of lupus. Like sore joints and dry mouth. No, lupus affects the skin in many ways, too (makes it tighten and sometimes causes the formation of painful sores). Internally, it can wreak havoc on the heart, lungs as said before, causing inflammation; yes, lupus can and does KILL.

Approximately two-thirds of people with lupus will observe some type of effect on their skin. In fact, 40-70 percent of people with lupus will find that their disease is made worse by exposure to ultraviolet (UV) rays from sunlight or artificial light. This study will take place in 30 areas of the US and will involve the use of  monoclonal  antibody to treat lupus.

As always, information here is not intended to take the place of the materials given to you by the clinical trial, but I know of the safety and efficacy of these trials.











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LUPUS, in a nutshell

Every disease, everything that ails us, usually has a descriptor, a very easy way of describing it. and here is a lupus descriptor that is a very basic. Future articles will expound on this video:

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Interview with Dr. Donald Thomas-lupus and Sjogren’s Syndrome

Comprehensive, yet easily understandable, this interview with Dr. Donald Thomas, M.D. discusses 27 secrets to living a better life with lupus and other and other autoimmune diseases. His book, “The Lupus Encyclopedia” needs to be in the library of every lupus patient.

Continue reading

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Just a few symptoms    aneiainlupus     chestpaininlupus     feverinlupus     lupusfatigue

These are common to many autoimmune diseases: joint pain,  anemia caused by disruption of the bone marrow which produces red blood cells, chest pain, fevers and  debilitating fatigue. What causes these symptoms? First, it needs to be known that not every rash is a tell-tale sign of lupus, nor is every instance of chest pain caused by lupus.

Here are some symptoms you may see, however:

  • Extreme fatigue
  • Purple or cold fingertips and toes
  • Sun sensitivity
  • Hair loss, mainly on the scalp
  • Low blood count
  • Red rash or color change on the face, across the cheek or bridge of nose
  • Unexplained fever for several days
  • Chest pain
  • Protein in the urine
  • Painful or swollen joints
  • Oral or nose sores
  • Depression, trouble thinking, and/or memory problems or other cognitive problems

In the same token, not every symptom named above is noted in every one of us. We each have a case of lupus that is individual, unique-but somehow, I don’t feel lucky!

What follows, is a partial list of symptoms and some of the reasons that you might develop them. Keep in mind that lupus is a disease of the immune system and inflammatory in nature.

Many people with lupus also have Sjogren’s syndrome, and the two conditions together can cause a dry mouth that can become so severe that the delicate tissue in the mouth ulcerate> mouth sores.  Medications to treat lupus can also be quite drying.

Anemia might be caused by a folic acid deficiency or a vitamin B-12 deficiency and there is discussion that anemia results from antibodies against components of the blood.

Hair loss, or alopecia, may be caused in part from exposure to the sun.

Vasculitis literally really refers to an inflammation of the blood vessels. This inflammation causes  leaking of blood from the vessels (which happens often near the ankles) to the tissues. Often what we see are discolorations in the skin, called petechiae.

These are just a few of the symptoms that present with lupus, but during the course of their disease,  not every symptom is present and some not mentioned ARE present.

The debilitating fatigue which can be from lupus is often caused by coexisting anemia. This isn’t always the case, but sometime a partial explanation.

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While writing another post, I came across this video, which, in 3 or so minutes speaks volumes about a lot about this disease:

 Support those who know no relief from this disease that can strike any place in their bodies:

You can help those ‘who don’t look sick’ and click the blue button below to be taken to the website of the

Lupus Foundation of America

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A book for every library, “The Lupus Encyclopedia”

The Lupus EncyclopediaI received “The Lupus Encyclopedia” for review and was initially a bit overwhelmed by it’s length. But as I turned page after page, I was pleased to read a very well-written and comprehensive book about a very complex topic and any preconceived notion that this was the lupus version of “War and Peace” because of it’s 800-page length, was set aside. “The Lupus Encyclopedia” is carefully-researched, easily-understood and comprehensive book. It is as it claims, an ENCYLCOPEDIA.

In very logical fashion and always with assertions and explanations backed up with facts, Dr. Thomas addresses the very complex topic of lupus and autoimmunity and succeeds, in stellar fashion, in making it understandable. There have been other books written that focus on lupus, but this was more thorough coverage of lupus and discussion of several other major autoimmune diseases. Because autoimmunity is so complex and Dr. Thomas explains it so well, his grade ought to be an A+.

After explaining the structure of the book and suggesting ways to use use it, he begins discussion with an explanation of how lupus received it’s name and proceeds with a chapter on diagnostic tests for lupus. Every topic that you could conceivably have a question about, is covered and indexed well so you can find everything easily.

In reviewing this book, I found that ‘all things lupus’ can fit between the front and back covers of one book: “The Lupus Encyclopedia.” Dr. Thomas has a gift for making the difficult to understand-undestandable. But, there are many areas of lupus and autoimmunity research that aren’t understood; in those areas he does not pretend to know the answers.

There is much discussion of the role of Complementary and Alternative Therapies in the treatment of lupus. He surely did his homework, covering everything lupus.

He gives caregivers advice, talks about how patients can talk to their physicians, gives resources for patients who need assistance, sometimes financial. Dr. Thomas doesn’t just list questions patients ought to ask their doctors, he gives the ‘whys,’ they should ask them and discusses how important it is that to establish a trusting relationship with your physician. He discusses the symptoms patients might look for and how you might monitor them at home. He gives patients suggestions about empowering themselves, how to critically think for themselves; without being their own doctors. Caregivers can learn a lot from this  chapter on “Practical Matters.” If you could can have only have one book in your library about lupus,  “The Lupus Encyclopedia” might well be it.

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English: The sacroiliac joint

This is another type of autoimmune disease that is more common than people think, but is not known all that well. Truthfully it was something that I had never heard of until my oldest son was diagnosed with it at age 28. He had been living with back pain for a few years, pain that kept him from holding a job where he was forced to stay in one position for extended periods of time, or where he had to bend and lift a lot.  Different people have differing episodes of severity, but let me share this explanation from Gabe Mirkin, MD

“If your back is stiff and hurts when you move, if it hurts to touch two points at the side of the top of your pelvis where it joins your spine (the sacroiliac joint), and if your back x ray shows signs of this disease, you probably suffer from ankylosing spondylitis. You may also have pain and swelling in your eyes, lungs, and heart valves.” Most doctors think that ankylosing spondylitis is an autoimmune disease in which a person’s immune system attacks and destroys the joints in his back, rather than doing its job of protecting a person from infection. They treat you with immune suppressants that may make you feel better, but increase your risk for infections and cancers and shorten your life. Nobody really knows why you have this condition, but the overwhelming evidence is that you inherited your susceptibility from your parents and you got this condition from an infection.”

” When you are infected, your body protects you by making proteins called antibodies and cells called white blood cells that attack and kill the bacteria. Your immune system recognizes each specific germ by the structure of its surface membranes. Ninety percent of people with ankylosing spondylitis have a gene called HLA-B27, which means that their cells have surface membranes that are like the surface membranes on many bacteria, particularly those that grow and live in your intestinal tract. So, if certain bacteria get into your bloodstream, your immunity recognizes these germs by their surface membranes and makes antibodies and cells that attack and kill them. However, if the cells in your body have similar surface membranes, your own immunity can be fooled and think that you are the invading germ and attack and kill your own cells.”

There is one more piece to the puzzle. All people with ankylosing spondylitis have changes in their intestines that look like a disease called Crohn’s disease in which they develop bloody ulcers in their intestines and sometimes terrible cramping and diarrhea. If intestinal bacteria are to cause ankylosing spondylitis, they have to have a way to get into the bloodstream, and the intestinal ulcers of Crohn’s disease could be the portal of entry.” You can read more from him at CIDPUSA Foundation

From the Spondylitis Association of America

Is There a Cure?
Currently, there is no known cure for AS, but there are treatments and medications available to reduce symptoms and manage the pain. Recent studies show that the new biologic medications can potentially slow or halt the disease progression in some people. Please refer to the AS Treatment and Medications sections for more information.

AS is in a Group of Diseases
AS is the primary disease in the group of diseases known as Spondylitis, Spondyloarthropathy or Spondyloarthritis.Ankylosis means “fusion”, which may be fibrous, or bony.Spondylitis means “inflammation of the spine.”

Causes of Ankylosing Spondylitis
Although the exact cause of AS is unknown, we do know that genetics play a key role in AS. Most individuals who have AS also have a gene that produces a “genetic marker” – in this case, a protein – called HLA-B27. This marker is found in over 95% of people in the caucasian population with AS (the association between ankylosing spondylitis and HLA-B27 varies greatly between ethnic and racial groups, see our AS Diagnosis section for more information). It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, a majority of the people with this marker never contract ankylosing spondylitis.

Scientists suspect that other genes, along with a triggering environmental factor, such as a bacterial infection, are needed to trigger AS in susceptible people. HLA-B27 probably accounts for about 40% of the overall risk, but then there are other genes working in concert with B27. There are probably five or six genes involved in susceptibility toward AS. It is thought that perhaps AS starts when the defenses of the intestines start breaking down and bacteria from the intestines pass into the bloodstream directly into the region where the sacroiliac joints are located.

Who is At Risk?
The risk factors that predispose a person to ankylosing spondylitis include:

  • Testing positive for the HLA-B27 marker
  • A family history of AS
  • Frequent gastrointestinal infections

Unlike other forms of arthritis and rheumatic diseases, general onset of AS commonly occurs in younger people, between the ages of 17-45. However, it can affect children and those who are much older. AS is more common in men, but occurs in women as well.”

This is not to say that every person that has back pain suffers from some type of disabling condition, or that it is all some type of autoimmune disease, but that if you or someone you know suffers from recurring and debilitating back pain, it should be checked by a Doctor that is knowledgeable. The longer a person suffers from the attacks on their spine by their own body, the more damage that can result.

Here is a partial list of the many resources available:

American College of Rheumatology — The American College of Rheumatology is the professional organization of rheumatologists and associated health professionals who share a dedication to healing, preventing disability, and curing the more than 100 types of arthritis and related disabling and sometimes fatal disorders of the joints, muscles, and bones.

Spondyville — A cyber-town for people with ankylosing spondylitis and their families and friends. Fellow SAA member Michael Smith runs an online support group to help people cope through humor, friendship, support, and information

The ASsessment in Ankylosing Spondylitis (ASAS) International Working Group — The ASsessment in Ankylosing Spondylitis (ASAS) International Working Group is an international group of experts in the field of ankylosing.

Ankylosing Spondylitis International Federation — The Ankylosing Spondylitis International Federation is a worldwide organization of national self-help societies for people with ankylosing spondylitis (AS). This site also lists spondylitis organizations’ contact information (address, phone number, email) for those without a website presence

OTIS, the Organization of Teratology Information Specialists — A non-profit organization made up of individual services (TIS) throughout North America. We are dedicated to providing accurate evidence-based, clinical information to patients and health care professionals about exposures during pregnancy and lactation.

As in all diseases, do not self diagnose, the possibilities of increased damage are not worth it. Find a reputable and knowledgeable Physician. There is plenty of information on the net of treatments, physical therapy and homeopathic remedies, but these should always be used in concert with your Doctor. And lastly, please always remember that you are an individual and that what works for one person may not work for someone else. Educate yourself but do it in cooperation with those who are interested in helping you.

2 years later I reposted this article by loopyloo in hope that it will get you thinking, praying for her as she fights a cancer battle. She has overcome much and will likely overcome this, because she has spirit and fight, But please pray that her spirit, her faith, and fight sees her through this latest challenge. 

I also repost this now because one of my oldest and dearest friends who is very active, and who went out of her way to make my ankle replacement doable and tolerable, was JUST diagnosed with this disease.  Back pain? Don’t take it ‘lying down!’

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