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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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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.

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“THIS IS LUPUS”

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

http://lupus.org

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Triggers and how they cause flares

First, this is a recap of previously agreed upon flare triggers:

Do you notice a trend; I do! I see that anything that places a stress on your system and requires that your body physically or emotionally adjust to a new set of circumstances has the potential to cause a flare of your symptoms.

So, how can each of the above triggers, throw you into a flare of your symptoms?  All of them put a physical or emotional stress on your system, but there are additional ways worth mentioning

  • not enough rest: Sleep deprivation is harmful to the immune system HOW? T cells are decreased when we get too little rest and when T cells are decreased or are decreasing, the body has a harder time fighting infection.
  • pregnancy places a stress on the body and if women become pregnant 6-8 months after symptoms become quiescent, they’re are less likely to develop a lupus flare during pregnancy. This means they need to plan pregnancies
  • when lupus patients have infections, they are likely to be started on medications. If you remember, STARTING a medication is an adjustment the body needs to make and rapidly starting a medication can trigger a flare
  • when people are overworked, they get too little sleep which can worsen their symptoms
  • emotional stress often causes us not to be able to sleep, to lie awake thrashing. When we don’t get enough sleep, T cells of the immune system have a harder time fighting infection.
  • ultraviolet light can trigger a flare Normally, an intact immune system rids us of aging or dying skin cells. Because sunburn can cause cell death and enough sunburn can cause enough inflammation so that more than ‘a simple’ sunburn results. UV rays can cause enough inflammation so that not just the skin, but the joints, muscles and internal organs are affected. FLARE
  • surgery: is a physical stress on the system and an emotional stress on the body, both of which trigger flares. Also, surgery can introduce medications (like antibiotics or anesthetics) not taken before, which can trigger a lupus flare. A cortisone injection (intravenous or intramuscular) is sometimes given.
  • viruses cause trigger lupus flares because they are a kind of infection and exposure to any infection causes the immune system to work ‘overtime.’

Wouldn’t it be great to be able to prevent flares, but knowing what can cause flares and how flares are triggered, gives some ideas as to how they can be managed. We’ll address that in another post.

 

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Some symptoms of lupus and their causes

Lupus causes many symptoms, but here are a few. Again, this list isn’t all-inclusive. How can you figure out what causes a symptom? Often all you need to do is consider the powerful inflammatory action that lupus causes, or the ending ‘itis:’ inflammation

  • The malar rash (butterfly rash) is often the first thing that comes to mind when talking of the symptoms of lupus; but not everyone with lupus gets it. When the immune system mounts it attack on the skin (cutaneous lupus), the attack is either acute or chronic. If the attack is acute, (acute meaning it comes rapidly and ‘goes’ rapidly), you might see the classic “butterfly” rash. It is often referred to by doctors as ‘malar’ because of the location on the face where it occupies. Many also refer to it as the “butterfly rash” because it’s redness involves the bridge of the nose and the cheekbones, looking like the the body and wings of a butterfly.
  • fatigue: The precise cause of lupus-related fatigue isn’t known, but disease activity, pain, age, and medicines can contribute to fatigue caused by lupus. Lupus compromises your sleep and too little sleep or poor-quality sleep can result in flares of your symptoms. During these flares, you’re likely to be depressed that there is more pain and other symptoms seem worse. 
  • chest pain. The lung is lined by a membrane, the pleura. Inflammation of the pleura results in the pleura rubbing rubbing up against the lung causing pain. This pain is usually a pain on inspiration (when you breathe in), a pain which may mimic the chest pain of a heart attack. This pain should never be taken lightly and should be reported to your doctor immediately. Most people who have/or had lupus, have had an instance of this inflammation.
  • If the membrane surrounding and protecting the heart (pericardium) becomes inflamed, pericarditis can result. Symptoms of pericarditis often resemble those of a heart attack because there may be sharp, stabbing pain as the heart rubs agains the pericardium. There can also be a fast heart rate or a dry cough or shortness of breath. This should not be ignored.
  • chest pain: Another source of chest pain is called costochondritis. I was privileged (?) to have costochondritis once and it felt like I’d been kicked in the chest: by a horse! Costochondritis is an inflammation of the cartilage that connects a rib to the sternum. Recurring episodes of costochondritis often lead doctors to make a more thorough exam and a diagnosis of lupus follows.
  • shortness of breath in lupus can be caused by several things, too. If there is pleuritis (inflammation of the pleura, or pleuritis) pain of lupus is caused by pleuritic chest pain, the person might guard against the pain, by not taking deep breaths. Taking shallow breaths results in not getting enough air in the lungs; therefore shortness of breath.
  • headache. The most common type of headache in lupus is the tension or muscle tension headache which will usually ‘go away on its own’ or with over-the-counter analgesics. Lupus also causes migraine headaches which are much more prevalent in lupus sufferers than non-lupus sufferers. However, another kind of headache is more rare, but much more serious and indicative of a life-threatening complication., meningitis. It is due to inflammation of the meninges (membranes which encase the brain). Your physician should be aware of a headache that you have.

These are just a few symptoms of lupus, but for brevity’s sake, I didn’t discuss them all. I’ll discuss others in another post.

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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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How can I be affected by lupus?

Because all immune activity is so varied and each individual's immune response is just that-SO INDIVIDUAL, responses to lupus may be so varied. Some people have activity and flares of this illness often or all the time while others rarely have flares. Often there is an identifiable trigger. In my case it's stress and I notice a direct correlation between those horribly achy joints, and stress. This video tells how various people are affected and the differences they may have in symptoms and triggers-and how their attitude makes a difference in their coping with this illness

About Lupus

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