Saturday, 21 December 2013

Another Ten Things You Should Know About Lupus

Here are another ten things you should know about lupus: 


Lupus can affect the heart and the rest of the cardiovascular system. It can cause heart diseases including pericarditis, myocarditis, endocarditis, atherosclerosis, heart disease and heart failure. Pericarditis, myocarditis and endocarditis are diseases which affect various tissues of the heart, caused by inflammation. Lupus patients have an increased risk for heart disease, due to factors including high blood pressure and steroid treatment. Steroids can increase the cholesterol levels in your blood. Heart disease occurs when cholesterol builds up in your blood, which accumulate into 'plaques' that clog up your blood vessels and arteries (atherosclerosis). This decreases blood flow, which can result in a heart attack if blood flow to the heart is interrupted. If the doctor suspects that you might have heart involvement, he/she will arrange blood tests, chest X-rays, an electrocardiogram, or an echocardiogram may be used to find out if you have a heart condition caused by lupus.


Low white blood cell counts are common in lupus, either due to active lupus, or certain medications (some immune-suppressant drugs), or another illness. The medical name for low white blood cell count is leukopenia. White blood cells are cells of the immune system and they are designed to protect the body from infection. There are several types of white blood cell: neutrophils (neutropenia is the medical name for low levels of these), monocytes and lymphocytes. Low white blood cells may make a person more susceptible to infection, which is why doctors carefully monitor your white blood cell count. 


As lupus can potentially affect everything and anything in the body, lupus patients often undergo a wide variety of tests, to diagnose lupus and other problems, and to monitor the lupus itself. However, there "are many challenges to reaching a lupus diagnosis. Lupus is known as "the great imitator" because its symptoms mimic many other illnesses. Lupus symptoms can also be unclear, can come and go, and can change." No two lupus patients are ever the same; lupus affects each person differently and in terms of treatment, what works for one, may not work for another. Therefore, treating lupus must be individualised for the patient. 

Diagnosing lupus is often a long and complicated process. The Lupus Foundation of America (LFA) say that the doctor will evaluate "your current symptoms, laboratory test results, your medical history and the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins)". The LFA add that "all of this information may be necessary for a doctor to make a diagnosis of lupus. A variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness." 


Blood disorders are common in lupus, according to the Lupus Foundation of America. They add that the most 'often affected by lupus are the red blood cells, the white blood cells and platelets', with the most common issues including anaemia (low level of haemoglobin or red blood cells), hemolytic anemia (destroys red blood cells),abnormal blood clotting, thrombocytopenia (low platelets) and leukopenia (low white blood cell count). Your healthcare provider should regularly arrange full blood counts.


Vasculitis is another autoimmune disorder that can coincide with lupus. Vasculitis means inflammation of the blood vessels. Vasculitis causes the immune system to attack the blood vessels, causing inflammation. There are a wide range of symptoms, depending on which part of the body is being affected. These may include: severe fatigue, fevers, weight loss, muscular and joint pain, peripheral neuropathy, visual problems, neurological problems (if the vasculitis affects the brain) such as headaches, seizures, strokes and mood disturbances, gangrene, and skin problems such as rashes, ulcers and petechiae. Vasculitis affects everyone differently and no two vasculitis patients are ever the same. Some people have mild forms of the disease, whereas others have more severe, life-threatening vasculitis. oms can be mild, or moderate or severe, or life-threatening. Just like lupus, vasculitis is diagnosed with a wide range of tests and medical history etc. Blood tests may include checking for ANCA and inflammatory markers such as CRP and ESR. Full blood counts are often arranged, because vasculitis can cause blood disorders like anaemia. Other diagnostic tests may include x-rays, MRI, ultrasound, electrocardiograms, biopsies, physiological tests and angiograms. Vasculitis is treated similarly to lupus, with biologics, immune-suppressants, steroids or cyotoxic drugs. 


Eye problems are quite common in lupus and include syndromes such as uveitis, nerve damage, scleritis and Sjogrens. 

The middle layer of the eye is called the uvea. Uveitis is the inflammation of this middle layer. Symptoms include: pain in the affected eye, blurred vision, bloodshot eyes, light sensitivity, visual distortions and a feeling of soreness. I have had uveitis before and the pain was horrific. It was treated with steroid eye drops and pain-killing eye drops. It took about a week for the treatment to work. Uveitis is a common disorder that occurs in lupus and other conditions that affect the immune system. Scleritis is the inflammation of another part of the eye called the sclera. 

Sjogren's is another systemic autoimmune disorder, which can affect the eyes and the rest of the body. The main symptoms include sore, dry, or sticky eyes, dry mouth, fatigue, joint pain and other symptoms including swollen salivary glands and rashes. It can affect the gastrointestinal system, the kidneys, lungs, liver and other organs. The dry eyes and mouth are the most common symptoms of Sjogrens. This disorder is commonly associated with disorders such as lupus, rheumatoid arthritis and other autoimmune rheumatic disorders. 

Information about treatment of Sjogren's: 
Currently, there is no cure for Sjögren’s syndrome. However, treatments may improve various symptoms and prevent complications.
In addition to over the counter (OTC) eye drops and mouth preparations, prescription products for dry eyes and dry mouth are available. They include Evoxac® (cevimeline), Salagen® (pilocarpine hydrochloride) and NeutraSal® for dry mouth and Restasis® (cyclosporine ophthalmic emulsion) and Lacrisert® (hydroxypropyl cellulose ophthalmic insert) for dry eye.
Some patients are prescribed immunosuppressive medications to treat their internal organ manifestations. Physicians may also prescribe other medications for systemic manifestations or severe flares. Since Sjögren’s syndrome affects each patient differently, a personalized plan should be developed by you and your physician, dentist and eye care specialist about how to treat your various symptoms.
In addition, many symptoms and problems of Sjögren’s syndrome can be treated with over-the-counter medications. These medications can help to alleviate different types of dryness and pain, but you should check with your physician when adding these medications to your regimen. He/she may have suggestions for what products you should use and may also give you some tips on how and when to use them.


Brain fog is a common complaint amongst lupus patients and is one that affects me quite badly. I find it hard to concentrate and I regularly forget my own, what day, month or year it is; why I walk into a room, where I am and what I am doing; I get tongue-tied and forget what I am meant to be saying halfway through my sentences, forgetting the words for things (or getting them muddled up) and I do whacky stuff, like putting the kettle in the fridge, or putting the remote control in my bad because I mistakenly think it is my mobile phone. If I listed all the odd things I have done during my fogs, I could probably write you a novel or two. Here is some practical information and tips for dealing with brain fog: 

Many patients have told me about their experiences with what they, like you, call “brain fog.” They say they have trouble remembering things and can’t think as clearly as they used to. It can be very alarming when this happens. Loss can be felt on many levels, from the practical loss of memory and the ability to think clearly to the general loss of what makes you uniquely you—your identity. People tell me all the time about the things they haven’t been able to do anymore because of lupus. Many have had to come to terms with these losses by redefining themselves and finding a “new normal.”
Doing this takes time. It’s a process that involves coming to terms with the way you now think and remember. This loss can be very difficult, but it does not mean you are defeated.

Meanwhile, there are practical things you can do to help your memory and fight back against “lupus fog”:
  • Make “To Do” lists to keep track of your tasks. People say, and I agree, that it feels so good to cross things off the list, so not only will it help you remember, but you could feel a great sense of accomplishment.
  • Use a calendar to remind you of appointments; electronic calendars can even be set to send you reminders.
  • Use alarms to help you remember tasks and appointments. Many cell phones have a built-in scheduler with an alarm.
  • Use a Days-of-the-Week pill box or other type of pill organizer to monitor when to take medication. Some even come with alarms.
  • Keep belongings in obvious places, and always in the same place. For example, always place your keys on a hook near the door, or your cell phone charger in your purse. It’s a comfort to know where things are!
  • Declutter. Being organized will help you find things. And letting go of unnecessary items can feel surprisingly liberating.
  • Label drawers, cabinets and shelves if you need help remembering how you organized your things.
  • Stock up on Post-It notes and place them strategically, where you’ll actually see them! Do you have to remember to pick up paper towel tomorrow? Write it on a Post-It and stick it on your front door. You’ll see it on your way out.
  • Keep a pen and pad on you at all times – in your pocket or purse. If you are out and about and happen to spontaneously remember something or are told something important that you don’t want to forget, you have a way to make sure you remember the information later.
  • Leave yourself voice messages on your cell phone or voice mail.
  • Keep a little digital camera in your purse to take pics and remind you of places you’ve been and things you’ve done. Cell phone cameras work for this too. Download and organize every month or so, to jog your memory and keep track of where you’ve been and what you’ve done…
If you are in the middle of a fog and are feeling frustrated or upset, don’t forget to pause and breathe. Remember that these challenges do not define you or your intelligence. You will get through the moment.


Lupus is a very complex condition and therefore requires complex management. As I often say, no two lupus patients are the same and every patient experiences different symptoms. A lupus patient needs an individualised treatment plan, which is managed by a multi-disciplinary team of healthcare professionals and by the patient himself/herself. Treatment will be tailored to your individual needs. Here is a brief overview of the lupus treatments available at this time: 

Treatments may differ, depending upon the person with lupus and the physician. There is, however, a general consensus on several forms of treatment:
  • physical and emotional rest
  • avoidance of, or protection from direct sunlight
  • healthy diet
  • prompt treatment of infections
  • avoidance of known allergens and aggravating factors
  • female patients must plan pregnancy for times when the disease is in remission
  • Medications most frequently used to control symptoms are nonsteroidal anti-inflammatory drugs (NSAIDs)
  • antimalarials
  • corticosteroids
  • immunosuppressants (or cytotoxic drugs)
  • other medications may be necessary to control specific manifestations

I'd also like to add that drug therapies using monoclonal antibodies are being used more often these days (e.g. rituximab) and in 2011, a new drug of this kind was invented, which is called Benlysta. Benlysta is the first lupus drug to be made in over 50 years. For more information about this drug, here is some further information: 


Muscle pains are quite common in lupus patients. "Two-thirds of people with lupus complain of muscle aches (myalgia), typically between the elbow and neck or the knee and hip. The muscle doesn't actually weaken, although in about 15 percent of people with lupus it become inflamed at some point, a condition called myositis," SLE Lupus Foundation says.

Myositis means 'inflammation of the muscles', and is another autoimmune disorder sometimes associated with lupus. I suffer with this condition too. It is often debilitating and I tend to struggle more with the myositis than I do with lupus. Symptoms of myositis may include muscle weakness, muscle pain, rashes, difficulty swallowing, muscle wasting and generally feeling unwell and tired. At times, my myositis has been so bad that I have been unable to lift my head off my pillow, or lift my arm to do my hair. I regularly struggle with climbing stairs, sitting down and getting up off a chair, swallowing, getting into and out of the bath, and generally getting out and about. It is usually diagnosed through a combination of medical history and tests, which include EMG, muscle biopsy, MRI, CT scans and blood tests checking your muscle enzymes (e.g. Creatinine Kinase) and other inflammatory markers. Myositis is usually treated with steroids and immune-suppressants, similar to lupus. I am one of the rare myositis patients who do not take steroids for this illness (though I do need them!) because I experience severe depression, mania and anxiety, whenever I take oral steroids. This is probably because I have had mental health problems for most of my life, so I may be more susceptible to the mental health side effects of steroids. 


Most lupus patients will experience joint pain, caused by the inflammatory processes of lupus. "Most people with SLE develop some joint and muscle pains. Sometimes only a few joints are affected, whereas other people have many joints affected. The small joints of the hands and feet tend to be the ones affected most. The pains may 'flit' from joint to joint. Joint stiffness is common and is usually worse first thing in the morning. Mild joint swelling may occur but severe arthritis with joint damage is unusual." Doctors call this 'lupus arthritis'. Symptoms of this include stiff, painful, swollen joints with redness and warmth over the affected joint. Lupus arthritis can potentially affect any joint in the body. The Lupus Foundation of America says "Compared to rheumatoid arthritis, lupus arthritis is less disabling and less likely to cause destruction of the joints".

What can be done about the joint pain? Here is some excellent information from the SLE Lupus Foundation

A doctor first needs to determine what is causing your discomfort, and rule out other possible causes. You may get some relief by applying heating pads to painful areas or taking warm showers and baths to lessen stiffness. Alternatively, try cold packs — this helps some people. If the joint is severely inflamed, handle it very carefully. Rest and elevate it (pillows and blankets are good props) as much as possible, and avoid putting weight on it. Also stay away from activity that increases pain, tenderness, swelling or the sensation of increased heat. A physical therapist or friend (he or she should get trained) can gently move the inflamed joint to prevent extreme stiffness. Finally, anti-inflammatory medications often help with pain and to reduce inflammation; ask your doctor for guidance.

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