Tag Archive | Systemic lupus erythematosus

What is lupus?

Lupus. What is it? I could say that it is an autoimmune disease, but you don’t answer a question with part of it’s definition! Rather, lupus is a chronic inflammatory disease, characterized by it’s fatigue. But anyone can get fatigued; so how do you differentiate between lupus and being tired due to lack of sleep or a host of other conditions? There are laboratory tests referred to in: lab tests helpful in differentiating lupus from other illnesses and they help predict symptoms which your doctor will order to rule in or rule out a diagnosis.

But I’m getting ahead of myself. Lupus is a disease, afflicting @1.5 million Americans, can be fatal and one in which the immune system of the sufferer goes haywire. Normally, cells of the immune system, detect foreign invaders, ‘mark them as foreign’ and other cells engulf them and destroy them.

However, in lupus, the immune system sees the body’s own cells as foreign, and mounts an attack on them: on SELF. That is why lupus is considered an autoimmune (immunity against oneself: auto). In lupus, any organ can be the victim of an attack. The lungs can be attacked in pleuritis, or the heart in pericarditis or the kidneys in nephritis.

The blood vessels themselves can be attacked in vascultis or the brain in lupus cerebritis. This short video, briefly explains autommunity, it you wanted to give friends or family members a brief tutorial, I’ve found this video to be very short and helpful:

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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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I Have Lupus: Should My Child Be Tested?

To test or not to test? Here are several reasons that research doesn’t support testing of all children born to mothers with lupus.

Approximately 25 % of children who have mothers with lupus will test positive for ANA (antinuclear antibodies). But, most of these 25% NEVER develop lupus. Just imagine the unnecessary lifetime of anxiety that these children and their parents would face if they tested positive-and then never developed lupus.

The opposite can be also be true. If children born to mothers with lupus tested ANA negative, they and their parents might develop a false sense of security about not developing lupus. The fact is, they can become ANA positive at any time in their lives. This could cause them to completely ignore symptoms.

Possibly, the better way to deal with the testing concern is for these children to learn the symptoms of lupus and also learn what the common triggers are. If a child is strongly enough genetically predisposed to the developing lupus, keeping the child in a ‘bubble’ isn’t going to prevent the onset of lupus. But knowing environmental triggers can give new meaning to ‘forwarned is forearmed.’

  • They ought to be urged to avoid unnecessary treatment with antibiotics, particularly those with Sulfa or Penicillin bases (like Bactrim™ or Septra or Penicillins)

  • They should be taught to wear sunscreen, in all seasons.

  • Speaking of sunscreens, they should never use tanning booths and should minimize direct exposure to the sun

  • Their diets should be right in Omega-3 fatty acids

  • After testing that their vitamin D levels aren’t high, they should take daily supplements of this vitamin because of the essential role that Vitamin D plays in immune and bone health, as well as in the cell itself.

  • exposure to ultraviolet light (UVA and UVB)

  • avoidance of certain medications (Drug-induced lupus) like estrogens (in the presence of antiphosphoiipid antibody syndrome), Apresoline, procainamide (often used for irregular heart rhythms), and isoniazid (used often for treatment of tuberculosis

  • cigarette smoking is hard enough on a pregnancy, but for a person with lupus who may have antiphospholipid syndrome, the pregnancy has greater risk.

 

 

 

 

 

 

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What causes lupus?

Many scientists, but not all, believe that lupus is the result of a combination of factors within the body (internal triggers -meeting factors outside the body (external triggers). One of those internal factors/agents might be a hormone. An example might be an individual with elevated hormone levels (internal agent) who encounters any number of environmental triggers.

These same scientists have not identified a specific environmental trigger, but their theory seems plausible and from where I sit, possible. Assuming hormones are one of those internal agents, they can make an individual more susceptible to developing lupus, particularly the hormone, estrogen. Both men and women have hormones, but they are present with more regularity in women.

If this hormonal theory is correct, is it any wonder, then, that more women than men (90%) develop lupus? It has also been seen that before and during their menstrual cycles (when estrogen production is higher). This also occurs in pregnancy. But, this cause/effect theory is hard to prove, because there are many women with lupus who take birth control pills (heavy with estrogen), or other forms of estrogens and they don’t see an increase in their lupus symptoms-or many don’t have lupus, at all.

There is no specific gene that one can test for that is a predictor of lupus; but lupus can run in families. A genetic link with environmental factors has some thinking; when fraternal twins are raised in the same environment, only one may develop lupus. But if the twins are identical, there is a much greater chance (about 25%) of lupus developing.

So what of environmental triggers? As discussed earlier, it is hypothesized that susceptible individuals need to be confronted with environmental triggers before lupus develops. What might some of these environmental triggers be? They can be ultraviolet rays from sun and even fluorescent light bulbs. medications which cause sun sensitivity (like tetracycline), sulfa drugs (Bactrim and others), penicillin or some other penicillin-based antibiotics, stresses on the body (physical and emotional) or pregnancy.

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How Can I Learn to Accept My Lupus?

Once a patient learns he has lupus, possibly the next question that arises is how to make a living with lupus. A diagnosis of lupus stays with you for the rest of your life. That is the reason that figuring out how to live with lupus includes making a few changes-physical, emotional, otherworldly and possibly spiritual-inside your family, at work and inside your social circles. As a rule, these changes will change how you see yourself.

It is vital to understand the critical distinction between seeing yourself as a person who happens to have a chronic disease and seeing yourself as a person who is defined by being a chronically ill individual whose ‘lot in life’ is to be sick. I’m here to help you learn to see yourself as that individual who happens to have a chronic illness.

What do I need to do to continue working with lupus?

Whether you were newly diagnosed with lupus or are a long time lupus patient there are some vital points to remember that are critical for your overall well being. Besides, establishing a good relationship with your doctor and having a support from your family and understanding the basics of the disease very well. These are some important tips to towards a happier life with lupus.

  • Maintain a Positive Attitude

Having a positive outlook and forward thinking are perhaps the two biggest steps towards living as happily as possible with lupus.. Your attitude plays a key role in your symptoms because stress, anxiety and negative thoughts impact your overall state of wellness. Choosing a positive attitude and making a commitment to enhance the quality of your life will ultimately lead you to cope up with the daily and ongoing challenges of living with lupus.

Sometimes maintaining that positive attitude is hard, very hard and seems to be impossible, but this is why it is important that you build into your life a support system; this system may include your church, friends and loved ones who understand what lupus is, if only marginally, and how lupus affects what you do and prevents your from doing the things that you used to love to do. They should also understand how not being able to do those things affects you. Equally as important is to understand that as of now, there is no known cure for lupus and that learning to live and cope with lupus and its challenges needs to be part of your lifestyle.

  • Maintain a Healthy Relationship With Your Doctor

Since Lupus is an ongoing, chronic disease you will be spending a great amount of time with your doctor over the years. Learn to make it quality time. It’s also very important to develop an honest relationship with your doctor and develop an ability to discuss each and every issue related to lupus. It is also very important to visit your doctor regularly and follow the medication regimen he or she prescribes; as well has have all the blood and lab tests he deems necessary, on regular basis.

  • Develop Strong Relationship With Employers, Coworkers and Family Members

A strong and reliable support network is important when dealing with lupus. Teaching family, loved ones, employers, coworkers and those closest to you what lupus is, will make them to understand the disease well and what you are going through. This will help them to extend their support and love towards you. They will then understand that you have ‘good’ days and ‘bad’ days and that you can be counted on to ‘give more than your all’ on ‘good’ days.

A strong and reliable support network is important when dealing with lupus. Ssupport group and online networking with other lupus patients will help you to reach out and share the information and inspire each other. Teaching family, loved ones, employers, coworkers and those closest to you what lupus is, will make them to understand the disease well and what you are going through. This will help them to extend their support and love towards you. They will then understand that you have ‘good’ days and ‘bad’ days and you will give more than your all on ‘good’ days. And also, support group and online networking with other lupus patients will help you to reach out and share the information and inspire each other.

  • Take An Active Role to Remain Healthy

Lupus patients need to take an active role to remain healthy throughout their life. One of the best approaches is to keep a diary of how your body feels. Paying close attention to your body, symptoms you may experience and documenting those symptoms is an important way to determine which medications work better for you and what trigger your symptoms.

  •  Include Exercise In Your Daily Routine

Exercising/working out is an essential part to make a happy living with Lupus. Talk to your doctor to the safest exercise options and include them in your daily routine, but some form of exercise is a must. See about including walking, yoga or Pilates are any kind of exercise, which improves your muscle strength and decreases stress.

  • Follow Precautions While You Are In The Sun

It’s best to develop the habit of applying sunscreen while you outside and reapply it for every 2-3 hours while you are in the sun. And also wear a wide brimmed hat to protect your face and neck. It has even been suggested that sunscreen should be worn indoors, too.

Obviously no one wants to have a chronic disease with no current cure. But today people who have lupus are living longer and can set attainable goals. But, ge kind to yourself and know that you are not alone and don’t set unattainable goals. Work closely with your doctors for a wellness plan and reach out to those who love you and stay motived and positive. And if in the case of any emergency please make sure to have an EHIC card with you for a medical treatment if you don’t live in the US.

~Ruby Andrew lives in Bristol, UK and is an avid reader and blogger. Since her early years she’s had a passion for writing. Her areas of interest are food, reviews (Book/Movie), Travel, Fashion, Lifestyle,Fitness and Wellness. She works as a guest blogger on her chosen areas of interest and currently writes on behalf of EHIC Card.




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My letter to lupus and all things autoimmune

May is Lupus Awareness MonthWhat better time than now to let lupus know what I think of it, so I decided to write a letter to lupus, telling it that you’re no longer welcome in my body. My experience with you began when I was 19 and I was diagnosed with Sjogren’s Syndrome, another autoimmune disease. It was only a bother when I was young, dry eyes, and infectious parotitis. But then, Sjogrens‘s began affecting my life.

Idiopathic Thrombocytic Purpura (commonly known as ITP) was diagnosed with a painful bone marrow biopsy and shortly thereafter, I was told that I couldn’t have children, I was told that you were the reason I suffered the greatest loss of my life, not being able to have children. I’m told that you orchestrated an attack on my ovaries and Premature Ovarian Failure was the reason my husband and I would remain childless. A family was my dream!

Then more asymptomatic and quiescent years. Then, what I thought was the flu with a high temp (106 degrees should have clued me in!) turned into treatment with high dose IV steroids for an allergic reaction to a medication. Two years later, you were diagnosed and shortly thereafter came the diagnosis of osteonecrosis (ON). So many theories abound about the etiology of ON. Lupus, in your ravaging of my body, you also orchestrated antiphospholipid syndrome

You’ve altered my life, robbed me of my late 40s, all 50s and I’ll be darned if I let you rob me of all my 60s. I’ve been told that now, lupus has given way to Sjogren’s Syndrome as my primary diagnosis. This ‘morphing’ from one autoimmune disease is not uncommon. But, the damage from lupus has been done. I have ostoenecrosis (ON) in most joints and I have had a knee, a shoulder and an ankle replaced.

The crowning blow and icing on the cake was that the autoimmunity gave me this thing called ‘Shrinking Lung Syndrome.’ I get short of breath with the least bit of exertion. My doc and I have thrown every med and and treatment at it, to no avail. For years, the ON in my ankles was so painful that as the years went by, I walked less and less and and eventually, I only rarely left the chair because of the tremendous pain from ON and shortness of breath. But, part of the problem seems to have been solved by an ankle replacement. I’m undergoing rigorous physical therapy, but I have a good 8-10 years to make up for, and that doesn’t happen overnight.

Not only have you robbed me of a good 30 years of life, participation in that life, children and caused undue pain; but the life of my husband has been changed. He has been with me through all the hospital and ER visits and driving me when necessary. We filed bankruptcy protection today. Not only are we indigent because of high medical costs, but our future is uncertain. Lupus and Sjogren’s, did you think about the impact on my life and so many other lives, when you entered out bodies? Well, you’re an unwanted guest: GET OUT OF HERE!

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“You’ve got lupus!”

“I feel like I’d been kicked in the chest by a horse,” were the EXACT words I used to describe what I was feeling to my doctor. He ran every test known to God and man, and then a few more, and still came up empty-handed. Then one day, he had a suspicion of something, ran an EKG confirming an incredibly fast heart rate, my respiratory rate was fast, and my chest x-ray only confirmed what he suspected. I had a pleural effusion; from what he didn’t know, but the instructions were, “meet me at the hospital, do not go home and dilly dally and pack a bag, do not pass ‘go’ do not collect $200! I think you get the gist that he felt that my getting to the hospital was urgent!

Yes, I had a pleural effusion and I don’t know how much fluid was removed from the lining (pleura) of my lungs. Some of that fluid was cultured and from that the docs received their diagnosis. You have lupus. I didn’t know it, but my life had changed.

That’s how I received my diagnosis, and you? I’d love for you the share, with me and others who read here, how you received your diagnosis and what symptoms you experience most.

There are so many ways in which lupus manifests itself and in this post, we’ll concentrate on lupus involvement of the lungs. Patients may develop pleuritis, the most common manifestation of lupus in the lungs. Pleuritis is inflammation of the pleura, the external lining of the lung.

The most common symptoms of pleuritis are shortness of breath and a SHARP PAIN ON INSPIRATION. Sometimes, fluid accumulates in the pleura: pleurisy; also a very painful condition found in @ 50 % of patients with lupus.

Another condition, PNEUMONITIS is an inflammation of the lung tissue itself; inflammation that doesn’t involve the pleura. This only makes sense, because lupus is a disease of inflammation.

The cause of pneumonitis is often bacterial or viral or fungal, but most commonly bacterial or viral. When someone has pneumonitis and their lung tissue has accumulated  fluid and the lung cells exude this fluid, the condition is called pneumonia. The fluid is usually called phlegm and contributes to the signs of pneumonia.

Vasculitis is an autoimmune disease affecting the blood vessels.  When vasculitis causes lung problems, it is because the inflammation involved in vasculitis, ‘cuts off’ necessary blood supply (and blood carries oxygen and nutrients) to the lungs.

Multiple sclerosis is an autoimmune disease that affects lung function: the muscles involved in respiration are weakened and because of this weakness of the lung muscles, pneumonia is common in multiple sclerosis patients.

Because lupus patients are often immunocompromised, either BECAUSE THEY HAVE LUPUS, or for treatment they receive for their lupus, lupus patients can develop fungal infections of the lung and tuberculosis.

Pulmonary hypertension is another manifestation of pulmonary involvement of lupus as is Shrinking Lung Syndrome. Both involve considerable shortness of breath. For these two complications of lupus there is treatment, but not cure.

There are more pulmonary manifestations of lupus AND of autoimmunity but space limits me to coverage of the complications I have noted.

Bronchi, bronchial tree, and lungs.

Bronchi, bronchial tree, and lungs. (Photo credit: Wikipedia)

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