Lupus - misc info and suggestions

Managing Lupus Flares:
For many of us, the thought of an ache or pain flaring up – think of the stiff knee your grandfather gets when there’s a storm approaching – is a small annoyance. For lupuspatients, a flare can be much more serious and is a reminder that the disease is still with them, no matter how long in the past it has remained quiet.
What causes a flare?:
Lupus patients often suffer unpredictable bouts of the disease – a flare – followed by periods of remission. What causes a flare is almost as unpredictable as when the flare will occur, but there are some common catalysts, including sunlight – especially those lupus patients who arephotosensitive – and an illness that does not go away. But stress, certain medications, and even pregnancy can trigger flares in lupus patients.
Those who have not been diagnosed, this continued reoccurrence of symptoms might be the first clue that lupus is the cause. For patients already diagnosed with lupus, flares may occur less.
What are some signs that a flare is imminent?:
Prior to the onset of a flare, lupus patients may notice a number of indicative signs:

• Out of proportion and persistent fatigue
• Persistent weakness
• Aching all over
• Slight to high fever
• Persistent loss of appetite
• Involuntary weight loss
• Increasing hair loss
• Nose bleeds
• Unexplained skin rash
• Painful, stiff or swollen joints
• Chest pain which increases with breathing
• Shortness of breath
• Persistent unusual headache
• Nausea or vomiting
• Abdominal pain
• Puffy eyelids
• Blood in the urine

How do I prevent a flare?:
Treatment plans for lupus help quell the onset of symptoms and flares. Those plans may include:

• Physical and emotional rest
• Aggressive treatment of infections
• Exercise
• Good nutrition; and,
• Avoidance of direct sunlight and other sources of ultraviolet light

Flares are to be treated seriously, however, as they are a sign that of increased disease activity. That is why it is imperative for lupus patients to take care of themselves, as well as understand and follow their treatment plan.
A note about medications:
Often, one of the more unexpected flare triggers is medications. What seems to be of help, could actually be of harm. So it is always recommended to check with your doctor before taking a new medication – and before stopping any medication, both over-the-counter and prescribed. And make sure you tell any nurse or doctor you’re unfamiliar with that you have lupus, so they are aware when prescribing medications.
Also, be wary of skin and scalp preparations. Check that you do not have a sensitivity to the item by first trying it on your forearm or back of your ear. If redness, rash, itching or pain develops, do not use the product.
Check in with your physician prior to receiving any immunization. Routine immunizations, like those for the flu and pneumonia, are an important part of maintaining your health, but you should make sure your doctor approves before getting the shots.

Sources:
“Signs and Symptoms That May Signal if a Lupus Flare is Beginning. Lupus Foundation of America Newsletter. January 1992. 26 June 2007
Lupus: A Patient Care Guide for Nurses and Other Health Professionals May 2001, Revised September 2006. National Institute of Arthritis and Musculoskeletal and Skin Diseases/National Institutes of Health. 26 June 2007
Lupus flares are a sign that your disease activity is increasing. Most patients who have dealt with lupus for some time can tell when a flare is coming on. Sometimes, it’s a surprise.
Although regular doctor visits and medication are effective ways to prevent flares, there are some other things you can do that may also help.
And while, unfortunately, there is little evidence indicating behavioral modifications can affect the rate of lupus flares, it always pays to do what you can to stay healthy and hope for the best.
1. Rest, rest, rest!
If you know a flare is coming on take steps to slow down and give your body a chance to fight the flare. Overworking your body might exacerbate the condition.
2. Reduce Stress Levels
Attempt as much as possible to avoid stress and stressful situations (I know, easier said than done, but it does make a difference on your body). Consider techniques like meditation andmassage to help slow things down and ease stress levels. If you cannot avoid stress, try to develop a support system to deal with it.
3. Exercise Regularly
We don’t need to tell you how important exercise is to overall health. But we will tell you to check with your doctor to see what’s most appropriate for your individual situation. Refer to Techniques No. 1 and 2 for reasons why you want to work with your healthcare team on the exercise technique that’s best for you.
4. Follow Doctor’s Orders
Keep lines of communication open with your doctor so that you catch any potential illness or complication in its earliest stages. And other than your lupus meds (over the counter, herbal and prescription), don’t start anything new without talking to your doctor, first. Any new medication can affect your disease’s activity levels. And don’t suddenly stop taking your lupus medication either –- it can trigger a flare. And tell your doctor about any injuries, infections, or sickness you have right away. These can open the door to a flare.
5. Keep Covered!
This one is a sure way to stave off a flare. Avoid sun exposure and ultraviolet light, including fluorescent and halogen bulbs. Nearly half of people with lupus are sensitive to this kind of light and –- you guessed it -– it can trigger a flare.
Source: Lupus: A Patient Care Guide for Nurses and Other Health Professionals Third Edition, Revised. September 2006.

Preventing Flares
No one can say for certain that there’s any way to prevent a lupus flare, but the Lupus Foundation of America does provide a number of “healthy habits” that can help patients reduce the potential for triggering a flare.
We’ve taken those habits and gone one step further, by providing some suggestions on how to get into those habits and stay in those habits – thus possibly increasing your chances of staving off a flare.
Take Your Medication as Prescribed:
How can you remember to follow your prescription? The National Heart, Lung and Blood Institute offers these suggestions:

• Take your drugs at the same time every day, linking it with something else you do regularly, like brushing your teeth.
• Write it down – and then use different colors to get your attention.
• Keep a chart or calendar. Use colored pens to track more than one type of medication.
• Use a pillbox.
• Use e-mail reminders to alert you to take your medication.
• Remember to refill your prescription. Make a note on your calendar to order and pick up the next refill one week before your medicine runs out.

Keep Your Doctor's Appointments, Even If You're Feeling Fine:
There’s a simple reason for doing this, and that is to keep lines of communication open and to catch any potential illness or complication in its earliest stages. That said, if you’re feeling well, what should you communicate to your doctor or healthcare provider? And how?
Here are some to dos that will help you make the most of your time with your doctor:

• Make a list of questions, symptoms and concerns
• Have a friend or family member come with you to help you remember or to act as yourpatient advocate.
• Use the time to find out who in your healthcare provider's office can assist you, and the best times to call.
• Review your treatment plan and ask how the plan will help you improve your health. Find out what might happen if you don't follow the treatment plan.
• Review your progress on your treatment plan.
• If there are aspects of your treatment plan that seem to not work, share your concerns with your doctor.

Don't Take Sulfa Drugs (sulfonomides):
Sulfonomides are used to treat infections such as bronchitis and urinary tract infections. Some common sulfonomides are Acetazolamide, Celecoxib, and Xipamide.
Limit Your Exposure to Sunlight:
This is called photosensitivity, and About Lupus includes an article on what it is and ways to avoid sunlight. Basically, it is suspected that UV light causes skin cells to express particular proteins on their surface, attracting anitbodies. The antibodies in turn attract white blood cells, which attack skin cells, which leads to inflammation. Apoptosis, or cell death, normally occurs at this point, but it is amplified in lupus patients, which increases inflammation.
Some basic tips:

• Avoid the midday sun
• Wear the correct clothing
• Use sunscreens
• Turn off other sources of UV light
• Take your medicine as directed
• Know what you’re taking
• Watch your make-up (try to buy brands that are also UV protectors, and that are hypoallergenic).

Reduce Your Risk of Infections:
Since lupus is an automimmune disease, the risk of getting infections is greater for lupus patients. Here are some simple tips on how to reduce your risk of getting an infection:

• Take care of yourself. Eat a balanced diet, exercise regularly and get plenty of rest.
• Work and play safe. Consider your risk for infection based on where you work (hospital? clinic? daycare? vet?).
• Pets provide many benefits to owners. To avoid infection from your pet, make sure your pet is up to date on all its shots and vaccinations to prevent disease. And always wash your hands after petting your pet, especially before you eat.
• Avoid eating raw or undercooked eggs
• Wash fruits and vegetables carefully before you eat them.
• Wash your hands, cutting boards, counters and knives with soap and water.

Don't Smoke:
This one is self-explanatory. And if you needed any more encouragement, consider that smoking is responsible for 87% of lung cancers in the United States. If you need help quitting, please read Quit Smoking 101 at About Lung Cancer.

 (borrowed from "lupus and Me")