Lupus

Wednesday, October 17, 2012

Flares

          Flares are a major part of having lupus, they can be mild to dangerous.  People with SLE often have other illness that flare as well and distinguishing them can be difficult at times.  Blood tests are one of the best ways for a Rheumatologist to diagnose a lupus flare; however, these tests are not always accurate when dealing with flares. Sometimes these tests can be normal during rashes and inflammation.  If you have any new or troubling symptoms always seek medical attention.

Lupus Foundation of America Achieves International Consensus on Definition of a Lupus Flare

January 10, 2011
LFA-FLARE Definition Will Make Significant Contribution to Lupus Clinical Research
http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=3604&zoneid=99
(Washington, DC) The Lupus Foundation of America (LFA) spearheaded a four-year worldwide initiative with more than 120 lupus experts from 11 countries, the pharmaceutical and biotechnology industries, and federal agencies, which resulted in the first-ever global definition of a lupus flare. The development ofLupus Foundation of America Flare Definition (LFA-Flare) helps to overcome long-standing barriers to the development of new, safe, and more tolerable treatments for lupus.

For the past 15 years, many trials of new investigational medicines for lupus have failed to show significant benefits for patients. A consistent and meaningful definition for a lupus flare is critical to evaluating the effectiveness of treatment over time. The new definition will enable more precise outcome measures for future studies, such as the number of flares or the time between flares. This will have a positive impact on the quality and scientific basis of clinical trials, which are required by the U.S. Food and Drug Administration (FDA) to demonstrate the effectiveness of any new therapy before it can be approved for general use in patients. 

The consensus definition is: A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.
“This definition addresses several controversial issues about how we look at flares of disease, which may have been interfering with the accuracy of how we evaluate new treatments,” said Joan T. Merrill, M.D., head of the Clinical Pharmacology Research Program, Oklahoma Medical Research Foundation, and LFA Medical Director.

A paper describing the definition and the consensus process is now available online and will be published in the March or April issue of the medical journal LUPUS. LFA-FLARE has high face validity and now is ready for validation in clinical studies. The Systemic Lupus International Collaborating Clinics (SLICC), a leading international consortium of lupus doctors, is evaluating this definition as a basis for modified outcome measurements of flare to provide an improved scientific basis for clinical trials.

The LFA thanks the lupus researchers from universities and industry who contributed their expertise to this project. A worldwide effort such as this brings hope to millions of people around the world who are living with lupus that new medicines are on the horizon.

The LFA’s National Research Program, Bringing Down the Barriers®, is dedicated to addressing research issues that have for decades obstructed basic biomedical, clinical, epidemiological, behavioral, and translational lupus research. The LFA’s approach to research is unique because it directs its funding to areas of research where gaps exist in the understanding of lupus, and to promising areas of study in which other public and private organizations have not focused their efforts. Using a three-pronged strategy, the LFA and its national network are committed to advancing the science and medicine of lupus by: directly funding research to close the gaps in lupus research; advocating for expanded investment in research from public and private sources; leading special initiatives; and forging collaborative efforts among stakeholders to address critical issues to advancing the science and medicine of lupus. For more information about the LFA’s National Research Program, visitwww.lupus.org/research.

Signs and Symptoms of Lupus Flare

Be aware of one or more of these symptoms:
  • Persistent fatigue out of proportion with what you would usually expect
  • Persistent weakness
  • Aching all over
  • Fever, which may be slight to high (you can check your temperature yourself)
  • Persistent loss of appetite
  • Involuntary weight loss
  • Increasing hair loss
  • Recurring nose bleeds
  • Sore on the roof of the mouth, which burns with spicy foods
  • Unexplained skin rash anywhere on the body
  • Hives
  • Sores on the skin
  • Painful joint(s)
  • Swollen joint(s)
  • Stiffness of the joints when waking up in the morning
  • Chest pain which increases with breathing
  • Shortness of breath
  • Coughing up blood
  • Persistent unusual headache
  • Nausea or vomiting
  • Recurring or persistent abdominal pain
  • Persistent, increasing swelling of the feet and legs
  • Puffy eyelids
  • Blood in the urine
Lupus is often a self-repetitive disease: watch for a recurrence of the symptoms that you experienced when your disease started.




Easing Joint and Muscle Pain
For many people, joint pain and stiffness are the first symptoms of lupus, or a sign that a flare is coming on. Joints in the hands, wrists and feet get stiff and painful to move, sometimes so much so that it is hard to get up from a chair or button a shirt. The shoulders, knees and ankles also get stiff sometimes. A doctor called a "rheumatologist" specializes in treating these achy joints ("arthralgias") as well as swollen and painful joints.
Why do people with lupus get pain and stiffness in their joints?
When lupus is active, there is inflammation (increased heat, swelling, and pain) throughout the body. As part of this inflammation, a thin lining in certain spaces around the joints grows and thickens. This change in size causes pain and swelling in the joints as well as tendons and special fluid-filled sacs that normally lessen rubbing between body parts. Inflammation also can lead to the release of body chemicals that break down bone and destroy a type of very hard connective tissue called cartilage.
Is this pain and stiffness the same as arthritis? 
No, since the bones and joints do not (usually) get damaged permanently, as they do with arthritis. But the pain and stiffness of lupus can still be very difficult to deal with, and some of the ways of handling arthritis work well for lupus.
Are muscles affected?
Two out of three people with lupus at some point complain of muscle aches. Often these aches are between the elbow and neck, or between the knee and the hip. While the aching can be intense, the muscle does not actually weaken, which is good. The muscle can also get inflamed (reddened, warm, swollen), although this is less common. A separate illness called fibromyalgia, which involves extreme muscle pain and tenderness at particular body points, sometimes happens at the same time as lupus.
How should pain and stiffness be treated?
Some over-the-counter anti-inflammatory drugs, such as ibuprofen, aspirin, and naproxen, may lessen pain and inflammation. Some people get relief by putting heating pads on painful areas or taking warm showers and baths to lessen stiffness. Others feel better with cold packs. Find what works for you, but also always check with your doctor.
What is the best way to handle a joint that is very stiff, tender, and inflamed?
Try resting and lifting up the joint (pillows and blankets are good props) as much as possible. Avoid putting weight on it. Warm showers or baths can lessen stiffness. Stay away from activity that increases pain, tenderness, swelling or makes your muscles "burn." A "physical therapist" (or trained friend) can gently move the inflamed joint to prevent extreme stiffness, but check with your doctor first. An "occupational therapist" can help with ways for coping and getting your strength back if tasks such as cleaning, bathing, and cooking are hard to do.
Is it important to keep joints and muscles healthy?
Resting and protecting joints are very important, but exercise keeps the muscles, bones, and tendons that make up the joint as healthy and strong as possible. So avoid weight-bearing exercises if you have joint pain, but also look for ways to stay active, such as gentle yoga or walking 30 minutes daily. Keeping active helps to control weight, boost energy, and put you in a better mood. Do what you can during a flare, and try to exercise more as you start to feel better.
Are there other kinds of joint problems in lupus?
Although much less common, other joint problems are possible, such as damage to the hip joint (possibly leading to severe arthritis), tendonitis, carpal tunnel syndrome, and the development of small lumps in the joints of the hands. Ask your doctor for more information about how to handle these problems.
Reviewer: Mark Jarrett, M.D.
Spring 2006

Easing Aching Joint and Muscle Pain in Lupus

By Mark Jarrett, MD
Staten Island University Hospital, Staten Island, NY
Is it common to develop joint pain and stiffness with lupus?
Up to 90 percent of people with lupus struggle with joint pain (arthralgia) and stiffness. For many, the discomfort is among the first symptoms of the disease. It often shows up in the small joints of the hands, wrists and feet, making it uncomfortable to walk and interfering with simple tasks such as buttoning a shirt or chopping vegetables. As the disease evolves, some people experience pain in other joints such as the shoulders, knees and ankles. Arthralgia is sometimes referred to as lupus arthritis, although the bones and joints usually don't suffer permanent damage.
Why are joints affected by lupus? 
As part of the inflammation involved in active lupus, the thin membrane of connective tissue called the synovium that lines certain joint spaces (for example, in the knees, hands, hips) grows and thickens. This change in size and associated inflammation causes pain and swelling not only in the joints but in the tendons and fluid-filled sacs called bursae that normally serve to reduce friction between body tissues. Connective tissue inflammation also can prompt the release of chemicals capable of eroding bone or destroying cartilage.
Is muscle pain common with lupus as well?
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.
What can be done to ease the pain and stiffness of lupus? 
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.
Will the discomfort go away? 
Usually, yes. Once you feel better and your physical condition has improved, start on an exercise program. This is ultimately worth it because while resting and protecting joints are extremely important, exercise is vital for keeping muscles, bones, joints, and tendons strong and healthy.
What are the primary areas of research in lupus—and is the cardiovascular system one of them?
With no major new treatment approved in more than 40 years, lupus needs a breakthrough. Researchers have made significant headway recently, however, reporting exciting findings in terms of how the disease works and what can be done to treat it. Among the discoveries are a deeper understanding of the genetic links to lupus and enhanced recognition of how lupus attacks the brain, kidneys, and skin. And several promising advances have also been made in figuring out lupus heart disease. Researchers have learned a lot more about immune system abnormalities that target this organ and have greater insight into biomarkers (predictors) of atherosclerosis. There are also improved techniques for early detection of heart disease, and more options for drug treatment.
Are companies developing new drugs to treat lupus?
Yes, finally. Several pharmaceutical companies are developing new medications. An online search will generate information on these companies and their drugs. You also can find websites that report new drug findings, such as www.LupusNY.org andwww.LupusResearchInstitute.org.
How can I help advance research and drug development? 
As a person with lupus, you can directly help in advancing lupus science—and simultaneously help yourself—by participating in a clinical trial. A clinical trial is a research project that evaluates the safety and effectiveness of medical treatments, drugs, or devices in human beings. The Food and Drug Administration (FDA) requires that such trials be performed before a product can be prescribed to patients. For information on clinical trials in lupus, try visiting the following websites: www.clinicaltrials.gov;www.LupusResearchInstitute.comwww.centerwatch.com.
What is the outlook for people with lupus?
There isn't a cure yet, but every year now researchers are gaining promising new insights into this disease and uncovering promising treatments. Just twenty years ago, only 40 percent of people with lupus were expected to live more than three years following a lupus diagnosis. Now, with earlier diagnosis, refinements in treatments, and careful monitoring, most people with lupus can look forward to a normal lifespan. More than 80 percent of people diagnosed with lupus in 2005 will live for 10 years or more.


Lupus: A Patient Care Guide for Nurses and Other Health Professionals
3rd Edition

Patient Information Sheet #4, Preventing a Lupus Flare

Your doctor has put together a treatment plan that is designed specifically for you and your lupus. This probably includes physical and emotional rest, aggressive treatment of infections, good nutrition, and avoidance of direct sunlight and other sources of ultraviolet light. Your doctor may have also prescribed medications to control disease symptoms and other health problems that you might have. One of the most important ways you can help yourself is to understand your treatment plan and the things you need to do to keep your disease under control.
Sometimes, despite the treatment plan and your efforts, you may experience a lupus flare. A flare is a worsening of symptoms that signals increased disease activity. A variety of factors can cause a flare, and you should contact your doctor immediately if you suspect a flare is developing. The doctor will evaluate your condition and take steps to control the seriousness of the flare. He or she will also reevaluate your overall treatment plan and make any needed changes.

Warning Signs of a Flare

  • increased fatigue
  • a new or higher fever
  • increased pain
  • development or worsening of a rash
  • development of symptoms you haven’t had before
  • swollen joints

What Triggers a Flare?

A flare can be triggered by one factor or a combination of factors. The most common are:
  • overwork or not enough rest
  • stress or an emotional crisis
  • exposure to sunlight or other sources of ultraviolet light
  • infection
  • injuries or surgery
  • pregnancy or the time right after the baby’s birth (the postpartum period)
  • sudden stopping of medications for lupus
  • certain prescription drugs, such as sulfonamide antibodies
  • over-the-counter medications, such as echinacea.

Caring for Yourself

  • Learn to recognize the warning signals of a flare and tell your doctor about them.
  • Maintain your physical health. Be sure to visit your doctor regularly, even if you are feeling well. Schedule regular dental, eye, and gynecological exams.
  • Get enough sleep and rest. Be flexible with your schedule of daily activities.
  • Try to limit your stress. Because this may be hard to do at times, consider developing a plan for dealing with potentially stressful situations. Develop a support system that includes family, friends, medical or nursing professionals, community organizations, and support groups. Remember, it helps to talk to someone when you’re feeling stressed.
  • Participate in a well-planned exercise program to help maintain physical fitness and reduce stress.
  • Eat a healthy diet.
  • Limit your exposure to the sun and other sources of ultraviolet light, such as fluorescent or halogen lights.
  • Tell your doctor right away about any injury, illness, or infection or if you do not feel well in any way.
  • Delay elective surgery (including dental surgery and teeth pulling) until your lupus is under control or in remission.
  • Lupus may cause problems for a pregnant woman and her baby. As a result, women with lupus should carefully plan any pregnancy. Do not stop using your method of birth control until you have discussed the possibility of pregnancy with your doctor and he or she has determined that you are healthy enough to become pregnant.
  • Talk with your doctor before you stop taking any prescribed medications.
  • Check with your doctor or nurse before taking any over-the-counter medications.
  • Be careful when trying any over-the-counter preparations used on your skin or scalp. First, determine whether you have a sensitivity or an allergy to it. Put a small amount of the preparation on the inside of your forearm or on the back of your ear. If any redness, rash, raised areas, itching, or pain develops, do not use the preparation.
  • Be aware that certain prescription drugs may trigger a flare. Tell any doctor, nurse, or health care professional you visit that you have lupus. Also tell your lupus doctor or nurse if any new medications have been prescribed for you.
  • Be sure to check with your lupus doctor before receiving any immunization. Routine immunizations, including those for the flu and pneumonia, are an important part of maintaining your health, and you should get them if your doctor approves.


Questions with Dr. Jinoos Yazdany - “Ask the Doctor” - Understand more about your lupus 

I was wondering if your lupus is not active, can you still experience symptoms. I had my blood work done and it’s not active at this point but I feel the symptoms like I am active. Always tired, achy and losing my hair. Taylorville, IL
The correlation between blood work and symptoms is not perfect, and it is not uncommon for people to feel that their lupus is active when their blood work is normal. It is important to talk about your symptoms with your doctor and see if an underlying cause can be determined. In some cases in which people have symptoms such as fatigue, pain and hair loss, it may indeed be active lupus. However, these symptoms can also result from a variety of other things, including metabolic disorders like thyroid disease or even psychological stress or depression. In my own practice, I carefully consider all these other causes before attributing things to lupus so that I can institute the most appropriate treatment.

What exactly constitutes a flare? It seems it has a wide range of symptoms. Lancaster, CA

When a symptom of lupus appears, whatever it may be, this is sometimes called a "flare". For example, if someone has a new lupus rash, this is a "flare" of their skin disease. Since every person's lupus is unique, so is what constitutes a flare.

We talk about the concept of flares in lupus because for most people, symptoms and signs of the disease come and go. Most people have periods when they feel fine and then periods when their disease is more active or "flares".


How can I tell if the pain that I have is the lupus, fibromyalgia or other overlap disease? Cornelius, OR

Lupus and fibromyalgia often co-exist, and determining whether one versus the other is causing pain can be challenging. There are some things that I use to distinguish whether pain is resulting from active lupus or from fibromyalgia. For example, if an individual is experiencing a lupus flare causing pain, it is likely that they have other findings, such as joint swelling, skin rashes, ulcers in their mouth, fever, or pain with breathing (pleurisy). Also, blood tests may show signs of active lupus, such as evidence of inflammation, low blood counts, or protein in the urine. None of these findings would be a feature of fibromyalgia, and would therefore make it more likely that pain is from lupus. If such signs of symptoms are present, I might prescribe medications to treat lupus, which in turn should help the pain improve. If the pain does improve with lupus treatment, this can be an important clue that it was caused by lupus.

In contrast, sometimes people have pain and no evidence of lupus or any other disease being active. In these cases, I would look to see if the pattern of symptoms is consistent with fibromyalgia. For example, pain in fibromyalgia is often widespread, and sometimes associated with other problems, like poor sleep, irritable bowel symptoms, tension headaches, cold intolerance, anxiety or depression. Treatments for fibromyalgia are entirely different from treatments in lupus, and that is why it is important to try to distinguish the two.





2 comments:

  1. My Rheum told me that mouth sores from Lupus are not painful and his nurse told me that flares can not cause fevers. How is it that I know more about Lupus than my healthcare "professionals"??? What do you do when your Dr. has no answers?

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    1. Chalet, Yes, they can be wrong a lot! Lupus flares definitely cause fevers that is in any literature you find on lupus. As for the mouth sores, they can be painless or painful but in the criteria for lupus by the American College of Rheumatology the mouth sores are usually painless, and on the roof of the mouth. However, many people suffer from very painful mouth ulcers associated with lupus. Actually there are mouth washes that are given to lupus patients for painful mouth and nasal sores. My newest nasal ulcer was painful and I have had both painless and painful mouth sores. I got this list from the Lupus Foundation of Colorado page: What are the symptoms of lupus?
      The signs of lupus differ from person to person. Some people have just a few symptoms; others have more. Lupus symptoms also tend to come and go. Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).
      Common signs of lupus are:
      Joint pain and stiffness, with or without swelling
      Muscle aches, pains, or weakness
      Fever with no known cause
      Feeling very tired
      Butterfly-shaped rash across the nose and cheeks
      Other skin rashes
      Unusual weight loss or weight gain
      Anemia (uh-NEE-me-uh) (too few red blood cells)
      Trouble thinking, memory problems, confusion
      Kidney problems with no known cause
      Chest pain when taking a deep breath
      Sun or light sensitivity
      Hair loss
      Purple or pale fingers or toes from cold or stress
      Less common symptoms include:
      Blood clots
      Seizures
      Sores in the mouth or nose (usually painless)
      Severe headache
      Dizzy spells
      "Seeing things", not able to judge reality
      Feeling sad
      Strokes
      Dry or irritated eyes

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