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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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Rituxan #3

Tuesday: was my third Rituxan® infusion. Walloped with IV steroids and IV Benadryl™ (both as pre-meds to prevent a reaction to infusion), the appropriate labs had been drawn.The premeds are given to prevent a reaction to the infusion.

Reaction to infusion? Essentially, the administration of any foreign drug is likely to elicit some response from the immune system. How and why could I react to this infusion? Well, think of this just like the immune system in lupus. There is a foreign invader (antigen and in this case, Rituxan®) and the body can mount an immune response with antibodies. The antibodies which attack foreign cells are called auto-antibodies.
If the body does mount a response, it usually is diminished with the body’s own antihistamines. The administration of IV steroids and IV Benadryl, an antihistamine usually prevents this reaction from occurring and treats it it it does. Symptoms of a reaction might be itchiness, hives, throat tightening, airway obstruction and distress and respiratory arrest.

 

I find the following video an easy way of remembering the definition of antibodies and antigens and auto-antibodies and their difference.

An hour after the infusion began, the nurse increased the rate as she had done 2 times before, but shortly therafter, I got a very intense itch on my back. I didn’t consider an infusion reaction; rather, I thought of dry skin on my back: because I forgot to lotion!
Just as quickly as the nurse stopped the infusion, she looked at my very itchy back. It was reddened and raised and blotchy red. My face was reddened and so was my neck, I was having a reaction. The infusion was turned off for an hour and when she resumed the infusion, she started it at a much slower rate and I was fine.

 

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Inflammation

For a long time, I’ve made posts long and lengthy. Then I realized, when I’m surfing the net, do I like to read a dictionary? an encyclopedia? No, short, sweet and to the point. So, starting today, it is short, sweet and to the point. Let’s start with  inflammation. In lupus, whenever something is inflamed, it’s usually related to-though not always; lupus.

Inflammation of most organ. or parts of organs is seen by us as redness and swelling, or hot, and painful. Redness can mean many things. not always lupus. Continue reading

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What is lupus?

discover your power“Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). ” I ‘borrowed’ this definition of lupus (Systemic Lupus Erythematosous) from the website of the Lupus Foundation of America which deals with every aspect of this disease (lupus) that could be thought possible.

It needs to be said that there are fine organizations which conduct research for, use donated revenues for education of, gather information about and educate about lupu. There is the Lupus Foundation of America, the Lupus Research Initiative and the Alliance for Lupus Research.  and including, but not limited to many educational sites such as Molly’s Fund, The Lupus Chick, Sometimes it is Lupus. this site: The Lupus Guru and Lupus, The Adventurer Between the Lines. Space limits the # of sites I can mention, but suffice it to say that the above blogs and websites frequently update their content and all make attempts to maintain an upbeat, updated presence on the internet.

So, what is lupus? You’ll find more thorough explanations on the sites listed above and as I post more on these pages, but-what follows is a short video presentation s which is accurate and if you need to have an explanation of what lupus is for concerned friends and family members because you’ve just been diagnosed with lupus, YouTube is incredibly accurate with this video!

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“Coping and Living with Skin Lupus”

Lupus doesn’t limit itself to INTERNAL organs. The largest organ in the body is the skin and when lupus affects this organ, it is often called discoid lupus, causing another source of problems (red scaly patches, hair loss). Lupus can just have EFFECTS (sun sensitivity, mild itchiness) on the skin, in which case, it is not discoid.

This is a very interesting presentation, differentiating Systemic Lupus from Discoid Lupus.

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“Organ Involvement in Lupus”

This podcast is one of a series produced by the Lupus Foundation of America for May which is Lupus Awareness Month. It can also be found in the archives maintained by C-span, available for public domain use. The Speaker interviewed is Dr. Diane Kamen, Associate Professor of Medicine, Department of Rheumatology, of the Medical University of South Carolina.

 

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