Lupus

Thursday, December 22, 2011

How to cope with pain associated with lupus

Lupus is usually a very painful disease there is joint pain, bone pain, muscle pain, migraines, Pleurisy is inflammation of the lining of the lungs and chest (the pleura) that leads to chest pain (usually sharp) when you take a breath or cough, organ pain due to inflammation, back and neck pain, abdominal pain.  I apologize if I missed any painful lupus manifestations, there are so many.  I like to use my heating pad a lot even in the summer it is really helpful for my pain. I also take pain medications that are over the counter and prescription, along with, meditation, and warm showers.  I found some really good articles about lupus pain, I hope they can help you to cope with your lupus pain.


Coping With Lupus Pain

Lupus-related pain is common, but there are medical and non-medical treatments that can help relieve your pain.

Medically reviewed by Pat F. Bass III, MD, MPH
If you've been diagnosed with lupus, you will probably have to cope with lupus-related pain at some point in the course of your disease. Ninety percent of lupus patients experience some joint or muscle pain, commonly caused by inflammation of the joints.
Lupus pain is different from other types of pain because its source and solution are often not that obvious. Lupus is a systemic disease and pain symptoms, like other lupus symptoms, tend to wax and wane. Stress may also play a larger role in triggering pain related to lupus than it would from other conditions.
Types of Lupus Pain
Pain can affect lupus patients in the following ways:
  • Arthritis. Swelling of the joints is common in lupus patients. Symptoms include pain, tenderness, stiffness, and warmth. Lupus usually causes arthritis in joints on both sides of the body and commonly affects fingers, wrists, elbows, knees, and toes. Stiffness is worse in the morning and gets better as the day goes on.
  • Fibromyalgia. As many as 25 percent of lupus patients may also have fibromyalgia, a condition that causes chronic muscle and joint pain. The cause of fibromyalgia is not yet known but it can also lead to fatigue, joint and muscle pain, and stiffness.
  • Lupus myositis. Lupus patients can have inflammation of the muscles that move bones, called "skeletal muscles." This can cause pain and muscle weakness.
Medical Treatments for Lupus Pain
"Anti-inflammatory medications such as salicylates, NSAIDs, and corticosteroids help with pain," says Amita Bishnoi, MD, a rheumatologist at Henry Ford Hospital, in Detroit. Your doctor may recommend one or more of the following medicines to help you manage your lupus pain:
  • Non-steroidal anti-inflammatory drugs (NSAIDs). These are the most commonly used medications for lupus pain. They include aspirin, naproxen, and ibuprofen.
  • Plaquenil (hydroxychloroquine). This is a drug that many lupus patients take to prevent lupus flares. Plaquenil can sometimes be used for pain control if NSAIDs are not helping.
  • Prednisone or Sterapred (corticosteroids). These medications can be used to control severe arthritis and are considered the best drugs for treating pain caused by lupus myositis.
Other Lupus Pain Management Options
"Some patients who have chronic pain that is not responding to medications should consider consultation with a pain management specialist. Some non-medical treatments for pain can also be useful, including acupuncture, biofeedback, massage, and physical therapy," advises Dr. Bishnoi.
  • Physical therapy. Physical and occupational therapy can help control lupus pain through exercises designed to keep muscles strong and to maintain the full motion of your joints. Physical therapy can also teach you ways to protect your joints from injury.
  • Mind-body techniques. These treatments take advantage of your mind's ability to influence physical symptoms. Breathing exercises, relaxation training, and meditation are all good ways of lowering stress, which can be an important part of your pain management plan.
  • Massage. This treatment can be very relaxing and soothing, but it's important to tell the massage therapist about your lupus diagnosis first. Ideally, the therapist should have experience working with lupus patients.
  • Acupuncture. This ancient treatment has been used for nearly 2,500 years to help people manage a variety of health ailments. The National Institutes of Health has concluded that acupuncture is effective in relieving many types of pain including pain related to fibromyalgia. Although there is limited evidence regarding the use of acupuncture to treat lupus pain specifically, a recent study published in the journal Lupus found that even a few sessions of acupuncture may be effective in reducing pain in lupus patients.
What if Lupus Pain Keeps You From Working?
If you have lupus-related pain that makes it hard for you to stay at your job, you need to know about your rights under the Americans With Disabilities Act (ADA). You are considered to have a lupus-related disability if your lupus symptoms cause one or more physical or mental impairments that substantially limit the major life activities you're able to engage in.

Talk to your employer about your lupus. The ADA requires your employer to make reasonable adjustments to your work environment to accommodate your health needs, if possible. This may include restructuring your job duties, changing your work schedule, or finding a different position for you within the company. If you want more information on the ADA, go to the U.S. Department of Justice Americans with Disabilities Act web page.
If you can no longer work — even with reasonable accommodations — you may need to consider filing for disability. There are two programs that may apply to your situation: The Social Security disability insurance program pays benefits if you have paid into Social Security long enough, and the Supplemental Security Income program pays benefits to disabled adults who have limited resources. Contact your local Social Security Office for help.
Even though 9 out of 10 lupus patients will have to cope with lupus-related pain, doctors have many options for managing it. Always let your doctor know when pain symptoms flare up. And if pain is making it hard for you to keep up at work, remember that you do have legal options and rights. 

Pain Management Approaches in Patients with SLE

http://www.lupuswa.com.au/aboutLupus/painManagement.html 

Dr Henry H Shen - a reprint from Lupus Foundation of America, Premiere Issue, fall 2003
Anyone who has been involved in the care of a patient who has systemic lupus erythematosus ( SLE ) knows that these patients often have complex and multiple problems.
Some of the difficulties which lupus patients face are accompanied by pain. An example of a controllable problem would be carpal tunnel syndrome due to active synovitis of the wrist. The patient who develops the rare complication of transverse myelitis or who develops avascular necrosis may end up with chronic pain.
The most common pain complaints voiced by SLE patients are due to active inflammation. Arthritis / arthralgias, pleuritic chest pain and pericardial pain are best treated with anti-inflammatory medications, antimalarials or, in severe cases, corticosteroids.
Patients with SLE also experience tissue damage, such as avascular necrosis, vasculitis or neuropathic dysfunction. The following addresses various treatment options for the pain associated with such damage.

Pharmacologic pain treatments
Opioids.
Morphine and other narcotics have been effective in treating many types of pain, In individuals with chronic pain, it is often better to place the patient on a long-acting narcotic preparation. This ensures that the patient always has an adequate blood level of an opioid. Patients who take short-acting opioids often have to wait for them to be absorbed before they experience relief, which may result in a cycle in which doses of pain medication must "catch up" to pain. It is important to emphasise that the use of narcotic medications does not automatically lead to addiction. In fact, addition rarely occurs in people who do not have a prior history of substance abuse.
Opioid medications have common side effects, which include, but are not limited to, constipation, nausea, vomiting, sedation, central nervous system impairment, and respiratory depression. There are four long-acting narcotics available to use in the United States at this time: time-release forms of morphine, oxycodone and fentanyl, as well as methadone, which has a half-life of more than 24 hours.
Antidepressants.
Antidepressants drugs have been shown to be effective in the treatment of neuropathic pain. The tricyclic antidepressants ( amitriptyline, nortriptyline, desipramine ) are associated with multiple dose-related side effects, which include dry mouth, drowsiness, dizziness, constipation, urinary retention, blurred vision, confusion, tachycardia and weight gain.
Selective serotonin reuptake inhibitors, or SSRIs ( fluoxetine, paroxetine, citalopram ), are reported to be effective in treating neuropathic pain, but clinical experience to date has been disappointing.
Venlafaxine is a newer antidepressant that has fewer side effects than the tricyclic antidepressants, and anecdotal experience so far suggests that it will be an effective medication for pain.
Anticonvulsants.
Anticonvulsant drugs have been used for years in the treatment of pain. Gabapentin is approved for the treatment of postherpetic neuralgia; however it has been successfully used in the treatment of many other pain states. Gabapentin may cause drowsiness or sometimes dizziness, but it is not associated with serious side effects.
Lamotrigine and topiramate are newer anti-epileptic drugs which appear to relieve pain in some individuals. <
Carbamazepine or its analog oxcarbazepine, as well as phenytoin are not used as often, due to inconsistent pain relief and some extremely rare but potentially serious side effects.
Antiarrhythmics and anti-spasmodics.
Another drug used for pain relief is mexiletine, an antiarrhythmic drug that is an oral analog of lidocaine. Its numerous side effects make it difficult to tolerate. Lidocaine is available in a transdermal patch, and some patients report marked relief.
Capsaicin is an extract from chili peppers. When first used, it may cause a temporary burning sensation, which abates if the product is used consistently.
The anti-spasm drug tizanidine has been reported to have analgesic properties separate from its muscle-relaxant effect. Its main side effect is sedation.
Chronic musculoskeletal pain in lupus
Many SLE patients seek a physician's assistance with joint pain, but the arthritis seen in SLE rarely causes permanent deformities. More common are fibro myalgic complaints. A small minority of individuals may have an inflammatory myositis, while others may develop avascular necrosis. Some of these individuals may benefit from surgery.
Those who have chronic musculoskeletal pain often develop a variety of other problems that tend to magnify their pain and impair their ability to function. These problems include the development of depression, deconditioning (due to limited physical activity), poor body mechanics, and maladaptive behavioural patterns. Such patients can be considered candidates for a multidisciplinary pain management approach.

Physical occupational and vacational therapy
Physical therapy and a regular exercise program are key components in the rehabilitation of patients with chronic musculoskeletal pain. Normal joint function requires adequate muscle strength, endurance and range of motion. A gradual and gentle exercise program often works well in this group. A variety of approaches, such as modified yoga-based exercise or tai chi have been used with success.
Most lupus patients can regularly perform stretching exercises; however they may need to temporarily reduce or modify a more active program during a flare. A physical therapist with experience helping patients with inflammatory forms of arthritis can be of great help in determining the proper level of exercise.
Registered occupational therapists ( OTRs ) assist people with physical problems, some of which are associated with pain. An occupational therapist can recommend assistive devices and practical modifications in the home or workplace. They also can teach proper body mechanics, energy conservation measures, joint conservation measures, and other approaches to maximise function despite a person's pain and anatomical abnormalities.
Vocational rehabilitation counsellors offer job training for people who are unable to continue working at their current jobs because of illness or illness-related conditions, such as a sun-sensitive farmer or an administrative assistant who can no longer type due to hand deformities. In some cases, advisors will recommend that patients seek further education. Vocational rehabilitation services are available through both private and public agencies.

Displacing the pain
Patients who add one or more of the following psychological components to their pain management plan often can lessen the impact of the physical discomforts :

  • Distraction can decrease a person's awareness of pain by directing the attention to something other than the discomfort; for example, listening to music, watching TV or movies, and engaging in hobbies, group activities or volunteer activities.
  • Relaxation techniques are widely accepted as effective self-improvement techniques. Relaxation not only reduces painful muscle spasms but also helps patients to deal with pain and other aspects of living with lupus. Techniques include meditation, self-hypnosis and other stress-reduction methods. These skills can be acquired via self­help books, tapes, or with the help of an instructor.
  • Imagery involves the person imagining his or her pain and discomfort, and using the power of thought to "destroy" the problem. Done for 15 minutes two or three times a day while listening to calming music, imagery can become an effective way to take away the pain for a period of time.
  • Rest is vital to a body that is trying to heal. Rest allows tissues and joints to get the time they need to repair themselves. Poor sleep also contributes to fatigue and a sense of not feeling well. According to New York rheumatologist and researcher Dr. Robert G Lahita, people with lupus should get at least seven hours of sleep per night. When necessary, sleep medications can be prescribed.
  • Heat can be applied locally when a joint or muscle is painful. Daniel J Wallace, MD, who isa practicing rheumatologist in Beverly Hills, CA, says that moist heat, such as a hot tub, Jacuzzi, shower or bath, is superior to dry heat. It is important to note that care must be taken when using this method if the individual has circulatory or sensory deficits.
  • Biofeedback teaches a person to alter certain body functions, such as blood pressure, with the use of electronic monitoring. Psychologist Robert H Phillips, PhD, founder of the Centre for Coping in Long Island, NY, reports that biofeedback has been used to reduce pain in certain symptoms of lupus, such as Raynaud's phenomenon, but has not been well studied for use in relieving other types of pain.
  • Acupuncture has a long history as a treatment for pain in Eastern medicine and has gained status for relieving pain in the West. However, studies in lupus have not been done.
  • Chiropractic adjustments that relieve muscle spasms and backache might help make a person with lupus more comfortable. Chiropractic approaches should be considered only in conjunction with proper medical treatment and probably provide symptomatic relief at best.
Depression in people with lupus
When people are depressed, they spend more time thinking about how they are feeling and their awareness of their pain can be heightened. Dr Wallace points out that depression is the most common coping problem in people with lupus.
Psychotherapy and counselling can help people with chronic illness like lupus verbalise and work through feelings of denial, anger, fear or frustration about impairments or limitations brought on by the illness. Counselling can also help people learn methods of coping with their illness and gain a sense of control in their new life with lupus. Some patients join support groups and find the perspective that only a fellow patient can provide to be invaluable in the struggle to cope with and manage their illness.
Medication, stress-reduction techniques, treatment for depression, increased physical activity, improved body mechanics, positive behavioural patterns - the multiple therapeutic options outlined in this brief overview should serve to emphasize the need for a coordinated approach in successfully treating the lupus patient with chronic pain.
 


Friday, December 16, 2011

Unsoliticed medical advice, it can't be that bad!

     Lupus is a disease that most people have heard of but usually do not know much about, yet it is an illness that people always seem to have the answer for or advice about.  Strangely, it seems that those who do not suffer from SLE, love to tell us sickies just what will makes us better, offering unwanted, unneeded, sometimes rude, often unfounded, strange, and potentially harmful antidotes, and or opinions. This "helpful" medical advice can leave us lupies feeling frustrated, hurt, unheard and of course annoyed.  Obviously we cannot control how someone perceives our illness, or the act of those giving us advice to stop, and think, and maybe, just maybe receive some knowledge from a reputable source before giving said advice.  There are also those lovely I know someone who knows someone who has lupus and they are fine or they are in remission.  I think this is one of the worst things that people say to me when said in an uncaring, condescending, minimizing my suffering, way.  When this is said like they even know what that person has gone through, when it really seems that they do not care.  I have explained many times about true remissions and that they only happen in 6% of lupus patients, so what some people think are remissions are actually drug induced, reductions of symptoms, meaning that person you are talking about is taking many medications, resting frequently, exercising and doing their best to function "normally".  Also everyone with lupus is different, we are known as snowflakes because we are each different in the way that lupus affects us.
 http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineempty.aspx?articleid=2756&zoneid=225
Q: Does lupus always eventually go into remission?
A: The simple answer is no. The more complex answer is that, for the majority of patients, the disease is characterized by periods of flares (i.e., active disease) and periods where things are relatively quiescent (i.e., inactive disease). In the latter situation, quiescence is usually achieved with medication.
Remission may be harder to define. One definition is that there are no symptoms, the patient is taking no medications, and all tests -- including the antinuclear antibodies -- become normal. In my study published 20 years ago, fewer than 6 percent of patients achieved that goal.
Therefore I prefer to say that lupus may often become quiescent, but some medication may be required to keep it that way. -- Peter Schur, M.D.

     It is also not so pleasant to hear that someone close to you has died of lupus and make our disease seem hopeless, but this I take much better than minimizing or not caring.  This reaction to me makes it seem like that person is concerned. 

     I get a chuckle when people think maybe if I slept more, or did a special diet, or did acupuncture, massage, or go to a chiropractor and my symptoms would just disappear.  I have no clue why people think that I have not looked into, done, asked or tried many things to help me feel better.  Of course, I have tried a number of things, you are not so clever as to mention anything I have not heard before, nor have you found the answer I have been looking for.  I also HATE when people think they have suffered more than me when having an illness that is not chronic, like a flu, honey I feel like I have the flu every day!  I don't mind when people give me unsolicited medical or life advice as long as they are not being rude, or condescending, if they are well meaning and kind, I take their remarks as concern not as minimizing how I feel.

     It is very nice to be told you look good, or pretty, or well, but just because I can slap a pound of make up on my face or body to cover rashes and lesions, wear my suck it all in jeans or dress, and smile, does not mean I feel like I look.  My hurting is inside except for when I have a rash that cannot be covered with make up or clothes.  For some reason people think there is a distinct look someone has when ill, like we should look like death is at our door step.  People also think that attractive people cannot be ill, like beauty cannot have a serious illness.  It is very strange, some of the reactions I have gotten for being an attractive woman, especially from fellow women.  I have literally gotten gasps from people like how could I possibly be suffering while having eye shadow on and a smile on my face.  I like to ask people when they tell me that I do not look sick, "What does sick look like?"  Most people cannot explain what they mean or maybe they are not prepared for my direct question made in response to their direct accusation.  I am not exaggerating my illness or how sick I am or feel, people close to me have seen me unable to walk, with the rashes on my body, the dark, puffiness under my eyes, my weight drop and gain, my hours spent in the bathroom vomiting, my thermometer reading of 102, my inability to eat, go out or talk.  They know I am not exaggerating my symptoms but down playing them.

     I would not wish this illness on anyone, I would say my worst enemy but I don't have any, fortunately.  I suffer chronically, this means daily and pretty much, forever.  I have the flu everyday, and simple tasks for a healthy person can seem insurmountable to me and others with SLE.  I do not like to complain so please do not tell me you know someone with a bad illness that never complains, maybe they just do not complain to you, or maybe they are doing well on days you see or talk to them.  I cannot help that I feel awful most days even with the medications that keep me semi functional sometimes.  I am not trying to burden you or make you sad, angry, or worry, I am just trying to deal with my illness, minute by minute, in the hopes that some day there will be a cure and or a vaccine, so that one day, no one else will ever have to suffer like I do.  I know that there are people with lupus sicker than me, and people with other diseases that are quickly fatal, but that does not negate my suffering or make my suffering any less.  I am obsessed with my illness because it never lets me forget it is there, I am sick every single day and my best day would be your worst.  Don't judge me for having lupus, embrace me because I am surviving. 

Saturday, December 10, 2011

How to cope with lupus without health insurance

     Sadly I read about a lot of people who either do not have health care or that are going to lose their health care soon.  These are people with lupus, a chronic illness that must be treated with medications, frequent doctor appointments and blood testing.  It is very important to have proper health care when suffering with lupus because lupus can go into any part of the body and cause damage and has the potential to become fatal even with good health care; therefore, it is dangerous for SLE patients to not have medications, blood tests and evaluations from doctors. I have included the complications associated with lupus and also some information regarding medical treatment without health insurance.  I hope this helps some people because it is so important to get treatment when suffering with lupus.

http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=complications 

Complications

By Mayo Clinic staff Inflammation caused by lupus can affect many areas of your body, including your:
  • Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and leg swelling (edema).
  • Brain. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, hallucinations, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts.
  • Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
  • Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy), which can make breathing painful.
  • Heart. Lupus can cause inflammation of your heart muscle, your arteries or heart membrane (pericarditis). The risk of cardiovascular disease and heart attacks increases greatly as well.
Other types of complications
Having lupus also increase your risk of:
  • Infection. People with lupus are more vulnerable to infection because both the disease and its treatments weaken the immune system. Infections that most commonly affect people with lupus include urinary tract infections, respiratory infections, yeast infections, salmonella, herpes and shingles.
  • Cancer. Having lupus appears to increase your risk of cancer.
  • Bone tissue death (avascular necrosis). This occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is most commonly affected.
  • Pregnancy complications. Women with lupus have an increased risk of miscarriage. Lupus increases the risk of high blood pressure during pregnancy (preeclampsia) and preterm birth. To reduce the risk of these complications, doctors recommend delaying pregnancy until your disease has been under control for at least 6 months.
Preparing for your appointment

Health Complications Associated With Lupus

Lupus can affect any part of your body, including the skin, joints, and kidneys. Learn how to protect yourself from complications.


http://www.everydayhealth.com/lupus/understanding/lupus-and-heart-disease.aspx




Lupus is an unpredictable autoimmune disease that can cause a variety of symptoms and complications. Autoimmune diseases, like lupus, cause the body's natural defense system — your immune system — to go haywire and attack normal cells as if they were foreign invaders.
"Every patient with lupus is different. Complications from lupus can occur in any of the major organs that lupus commonly attacks. However, the most commonly involved organs are the skin, joints, and kidneys," says Doruk Erkan, MD, a scientist at the Barbara Volcker Center for Women and Rheumatic Diseases at the Hospital for Special Surgery, in New York City. "Some of the lupus manifestations, such as kidney, brain, or heart involvement, can cause serious long-term complications."
Possible Complications of Lupus
The list of possible complications from lupus is long and may include:
  • Joint and bone damage: "Most people with lupus have swelling in their joints," says Dr. Erkan. "In addition, joint pain without swelling is very common. A long-term complication is osteoporosis." Lupus-induced osteoporosis is due in part to the lupus itself, but may also be caused by the steroids used to treat the disease.
  • Kidney disease: Inflammation of the kidneys, called nephritis, is one of the most serious complications of lupus. "Lupus can cause damage to the kidneys that decreases the kidneys' ability to filter your blood," says Erkan. Kidney damage can happen before you have any symptoms, so it's important to have your kidneys checked out on a regular basis, says Erkan.
  • Skin rashes and hair loss: Lupus can lead to severe rashes that cause scarring. The disease may also cause significant hair loss.
  • Anemia: The most frequent blood-related complication of lupus is a drop in the number of red blood cells, or anemia. Lupus can also affect other blood cells. It can cause a decrease in white blood cell count, which can lead to infections. The disease may also damage platelets — the cells that help blood to clot when you're bleeding — which can result in excessive blood loss.
  • Blood vessel injury: Lupus can cause inflammation of the blood vessels, called vasculitis. This disrupts the blood's ability to circulate and can cause many complications, including dangerous blood clots. "Lupus patients who have a type of antibody called antiphospholipid antibody are [even] more prone to blood clots," says Erkan.
  • Heart disease: Muscle tissue and the valves in the heart can all be damaged by lupus. People with lupus can also develop a dangerous collection of fluid around their hearts, called pericardial effusion, which impairs the heart's ability to beat properly. Additionally, lupus is associated with an increased risk of heart disease at an earlier age than in people without lupus.
  • Neurological disorders and psychiatric problems: "Decreased blood supply in the brain due to complications of lupus can cause a stroke," says Erkan. Lupus can also lead to seizures and psychiatric disturbances. Unfortunately, the high doses of steroids often used to treat lupus can cause psychiatric problems as well.
  • Respiratory illness: Inflammation of the tissues lining the lungs is common in lupus. This may cause a buildup of fluid, called pulmonary effusion, which can make breathing difficult. Damage can also occur inside the lungs, causing scarring and loss of healthy lung tissue.
  • Difficult pregnancy: "Complications with pregnancy are more common in women with lupus. This is especially true in patients who have active disease before pregnancy or who have persistent antiphospholipid antibodies," says Erkan. A woman with lupus should talk to her doctor about conceiving before becoming pregnant. Once pregnant, women with lupus need to be carefully monitored. You should not attempt to get pregnant if you have active kidney disease.
  • Cancer: People with lupus have a slightly increased risk of having leukemia, lymphoma, lung cancer, and liver cancer.
What Can You Do to Reduce the Risk of Lupus Complications?
Take the following steps to help reduce your risk of complications associated with lupus:
  • See your doctor regularly. With the proper lab tests your doctor can often tell when your lupus is becoming more active even before you have symptoms. Close monitoring of lupus allows for early and more effective treatment.
  • Avoid exposure to sunlight. Ultraviolet rays of the sun often trigger rashes and other lupus symptoms.
  • Eat right and exercise. A heart-healthy diet and regular exercise may lessen some of the complications associated with lupus.
  • Get plenty of rest. Avoid becoming overtired or overstressed as these can aggravate lupus.
  • Talk to your doctor before getting pregnant. Your doctor can take steps to ensure it is safe for you to become pregnant.
  • Don't change medications. Don't stop or start any medications without first consulting your doctor.
  • Don't smoke or if you do smoke, stop. Smoking is a trigger for autoimmune disease and may play a role in the risk of cancer associated with lupus.
  • Educate yourself. Learn as much as you can about lupus and become active in managing your disease.
Lupus: Long-Term Outlook
Fortunately, many of the complications of lupus can be prevented by learning how to manage your disease and working closely with your medical team. Long-term survival among people with lupus is well over 80 percent, and many people with the condition are living longer and healthier lives than ever before. Current lupus research offers hope for new treatments, improved quality of life, and perhaps even a way to prevent or cure the disease.



http://findahealthcenter.hrsa.gov/Search_HCC.aspx

Federally-funded health centers care for you, even if you have no health insurance. You pay what you can afford, based on your income. Health centers provide
  1. checkups when you're well
  2. treatment when you're sick
  3. complete care when you're pregnant
  4. immunizations and checkups for your children
  5. dental care and prescription drugs for your family
  6. mental health and substance abuse care if you need it
Health centers are in most cities and many rural areas. Type in your address and click the 'Find Health Centers' button to find health centers near you.

 

 






 
  NOTE: The data used for this tool is current as of 12/9/2011 in the HRSA Data Warehouse.
  HELP: CallCenter@hrsa.gov or (877) 464-4772, Monday through Friday (except Federal holidays), 9 am to 5:30 pm ET.


How to: Get Better, Cheaper Health Care Without Insurance (25 Tips, Tricks and Resources)

http://www.rncentral.com/nursing-library/careplans/how-to-get-cheaper-healthcare-without-insurance

Health care has been at the forefront of political and popular debate more than ever as costs continue to rise in the face of an unstable economy. With rising energy costs, falling real estate prices, and no national health care system, many people simply have to learn to do without the medical care they need. There are, however, ways to save on health care costs without having to sign up for a pricey insurance plan. Here are a few tips for saving your healthcare dollars and finding cheaper insurance, as well as a number of information sources for localized, low-cost healthcare.
Medical Care
Need some advice on how to cut down on your skyrocketing health care costs? These tips can give you a few ideas that may help take some of the pressure off of your wallet.
  1. Take advantage of walk-in clinics. Chances are, if you just have a head cold or need a refill on a prescription like birth control pills, you don't need to head into a full-fledged hospital or even a traditional doctor's office. These facilities tend to be cheaper and can suit the needs of most people for any minor illnesses or medical issues. Major retailer Wal-Mart has even announced plans to open their own clinic, allowing you to get a diagnosis for your cold while you're picking up some chicken soup. Many chain drugstores like Walgreens and CVS already have this kind of clinic on-site.
  2. Consider alternative therapies. Chronic back pain and stress related illnesses, no matter how annoying they may be, may not always warrant a trip to the doctor's office. Many alternative therapies like massage and acupuncture can be just as effective and might save you a few dollars in the long run. Before starting any of these therapies, however, make sure you are in the proper condition to do so.
  3. Try a nurse. Nurse practitioners can often give patients just as good of care as doctors, but at a much lower cost. When care from the two are compared, studies have shown that nurses often have more time to spend with patients and do just as good of a job diagnosing problems.
  4. Research medical tourism. While there is some element of risk involved with traveling abroad to have surgery, the reality is that medical tourism is becoming increasingly popular. Often, patients can undergo elective or necessary surgeries at a mere fraction of what they would if they stayed in the US. As an added bonus, many facilities offer rest and recuperation in a spa or resort-like environment. Before considering traveling abroad to save on medical procedures, make sure you have considered and weighed all the risks and are in fit condition to make the journey.
  5. Check out a health fair. In an attempt to increase the number of people who get screened for some of the most common illnesses and diseases, many health fairs and clinic openings will offer free routine screenings. These can help you to get an idea of your blood pressure, blood sugar and other symptoms that could be telling of a major medical problem. While you won't get a firm diagnosis, you will get the advice and information you need to figure out if you need qualified medical attention.
  6. Volunteer for medical schools. Many medical schools offer communities low-cost or free medical care clinics that the school uses as a training ground for its students. If you can brave the crowd of students and the longer wait time as your case is discussed, you can enjoy high quality and low cost health care.
  7. Pick up the phone. If you're prone to sinus infections or just need some help with seasonal allergies, you might be able to get medical help over the phone. Services like TelaDoc cost $35 plus a registration fee and a monthly fee, but can get you help for small problems without the cost of an in-office visit. Keep in mind that the service isn't meant for serious issues or more complicated diagnoses.
  8. Avoid the weekend. Unless you have a true medical emergency that sends you to the hospital on the weekend, its best to schedule routine procedures and hospital check-ins during the week. Many hospital departments are closed during the weekend or have reduced staff, which can quickly elevate the cost of even a short stay in the hospital. You'll get more attention and a smaller bill if you wait until Monday to head into the hospital.
  9. Check your bill. Don't take it for granted that your bill is entirely accurate as it is sent to you. Experts say that up to 50% of hospital bills may have errors in them. While not all of these errors are huge, every little bit you can save on healthcare helps, so check and double check the accounting on your bill. If you feel that there's a problem with your bill take it up with the hospital's accounting department or work with the Alliance of Claims Assistance Professionals who can negotiate a settlement for you for an hourly fee.
  10. Strike a deal. Investigative journalists Donald Barlett and James Steele discovered that customers footing their own bills were often charged much more for the same treatment than that covered by insurance or Medicare. If you feel your bill is disproportionate you may be right. Take up your concerns with the hospital and see if you can negotiate a price that's more reasonable. If they refuse to budge, you may be able to gain more ground by hiring a lawyer who specializes in these types of cases.
Prescriptions and Equipment
Those living the the US often pay much more than those in other countries for prescription drugs. There are ways to cut costs, however, as you'll see with these money-saving tips.
  1. Shop around. Just because one store sells the drugs you need for one price doesn't mean that every store will. Take the time to comparison shop on the Web before you ever head out to your local pharmacy. You can find help in locating the lowest prices with Consumer Reports, the AARP or the Medicare Rights Center.
  2. Buy store brands. Worried the store brand cough syrup or heartburn medication won't work as well as the name brand alternative? Your fretting could be unfounded, as many store brands are manufactured by the same company and simply sold under a different name and price tag. If you're still in doubt, check the ingredients, many will be virtually identical.
  3. Go for generic. With ads for drugs all over the place nowadays, its easy to get a name-brand stuck in your head as the only option for treatment of a particular ailment. But the reality is that generic drugs can provide these same benefits at a fraction of the cost. Talk with your doctor about your need to save money and see if there's a cheaper alternative to your current prescription.
  4. See if you qualify for freebies. Those with low incomes may actually qualify to get some assistance in purchasing their necessary prescription drugs. Older individuals on a fixed and low income can check with the The Partnership for Prescription Assistance or the drug manufacturer to see if they qualify for any of the prescription assistance programs. Those who don't can still score freebies for short term prescriptions by asking their doctors for samples. Drug companies often distribute these as a way to get more business, but there's no reason you can't take advantage.
  5. Double up. Medication often comes in a wide variety of dosages to suit the needs of patients, but depending on what you need to take, you may be able to save money by taking more of a lower dosage pills than just one of a higher dosage. While this may not be possible in every case, it's an option worth checking out if you need to pinch pennies.
  6. Cut it in half. Likewise, some medications are cheaper to buy in higher dosages and split into the smaller dosages you need. Most medications that come in tablet or pill form (not capsules) can easily be split in half. Of course, lways make sure to check with your doctor before altering any medication to make sure its safe and effective for you.
  7. Get creative. Work with your doctor or pharmacist to see if you can't find a lower cost solution to your prescription drug costs. In some cases, combining two lower cost medications may give you the exact same result as one higher cost one and could save you a significant amount in the process. Keep in mind, though, that you should never mix medications without consulting with your physician first, as many drugs can have serious side effects when taken in conjunction with others.
  8. Reuse and recycle. Need a new walker, adjustable bed or crutches? In many cases there is no sense in paying full price for these items that you may only use for a short time or not very often. Friends, neighbors or even a church group may have equipment that can suit your needs at a greatly reduced cost.
  9. Bargain for frames. While you might be able to get away with not going into the doctor for a cold, you can't get by without eyewear that suits your current needs and prescription. Trouble is, glasses are often marked up 1,000 percent or more. For lower cost frames try shopping at retail stores or large chains instead of the eye doctor's office. If you simply have to have the pair at your ophthalmologist's, see if you can't bargain down the cost or get extra features added on for free.
Resources
Still looking for advice on cost-cutting measures? These helpful resources can get you started on the path to cheaper and better health care.
  1. Health Resources and Services Administration: This site from the US government can help you find low-cost health care centers in your area, get access to need-based health care assistance and even help expecting mothers find a way to get reliable prenatal care without incurring huge fees.
  2. Medical Information Bureau: Can't understand why you are quoted such a high rate for medical insurance? The MIB maintains records on insureds that are given to member organizations when they are underwriting your policies. Understanding how this process works and knowing about your own health insurance history can help you find ways to lower your insurability costs.
  3. Artist's Health Insurance Resource Center: For many who are self-employed either in their own business or working as a freelancer, getting health insurance or affordable health care isn't always easy. This site provides resources for actors, businesspeople, low-income workers and the under-insured that help manage their health care needs in a way that won't hurt their finances.
  4. The Health Assistance Partnership: If you're not sure where to begin looking for help on what rights you have to health care and coverage, try giving this site a thorough read. You'll find information regarding legal rights to treatment and free information on Medicare, Medicare drug coverage, Medicaid and low-income benefits, supplemental coverage and long-term care.
  5. Bureau of Primary Health Care: You don't have to hunt around fruitlessly to find government subsidized and low cost health care in your area. This site gives a state-by-state guide to low-cost health centers, especially those in areas that are typically undeserved medically.
  6. NIDCR Guide to Finding Low Cost Dental Care: Dental care is an integral part of a health care plan, and you can get information on how you can save on your next visit to a dentist with these helpful tips, links and resources from the National Institute of Dental and Crainofacial Research.

Know Your Options: How You Can Stay Covered by Health Insurance

http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=3509&zoneid=67
By Jenny Thorn Palter
Because lupus is unpredictable, there may come a time when you are between jobs or are forced to stop working for health reasons. Or, you may not have employer-sponsored health insurance at all and have been denied coverage by independent insurers. There are safety nets that can help. We introduce you to three of them. Go to lupus.org/reform and healthcare.gov for the latest news.

SAFETY NET 1
Q. My doctor has advised me to stop working because lupus is causing so many symptoms. What will I do about health insurance coverage?
A. Submit your paperwork for SSDI.
What is this? The Social Security Disability Income (SSDI) program is the largest of several federal programs that assist people with disabilities. The program pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid into FICA (Federal Insurance Contributions Act), which is a U.S. payroll tax.
What agency has oversight? SSDI is administered by the Social Security Administration (SSA).

How does it work? Through the application, SSA collects specific medical and other information from you and decides whether you meet SSA’s definition of disability; SSA does not consider you disabled unless your illnesses, injuries, or conditions prevent you from doing your past work or adjusting to other work. If you cannot do your past work, SSA will look at your age, education, training, and work experience to see if you can do other kinds of work. Go to ssa.gov/disability/step4and5.htm to read frequently asked questions (FAQs) about this process. You also may want to use the Benefits Eligibility Screening Tool at connections.govbenefits.gov/ssa_en.portal to find out which programs may be able to pay you benefits.
How does it help a person with lupus? There are specific criteria for lupus in the SSD Blue Book:
A. Involvement of two or more organs/body systems, with:
1. One of the organs/body systems involved to at least a moderate level of severity and
2. At least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss)
OR
B. Repeated manifestations of SLE, with at least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss) and one of the following at the marked level:
1. Limitation of activities of daily living
2. Limitation in maintaining social functioning
3. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace
Net notes
There is a 12-month waiting period before you can apply. Also, the physician who treats you must be willing to help—the most important aspect of filing for SSDI. Your physician must be thorough in documenting why you are unable to work.
Your own notes will be useful as well, so you are encouraged to keep notes on how you are managing the “activities of daily living.” Only individuals who have a disability and meet medical criteria may qualify for benefits.
Sheri Abrams, attorney at law of counsel at Needham, Mitnick & Pollack, PLC, based in Falls Church, VA, says, “As soon as you become disabled and it seems you may not be able to go back to work for a year or more, put in the SSDI application. You don’t want to go even one day after the 12-month waiting period before applying, because every day after that year, you will lose money.”
It is not uncommon for SSA to deny your application initially and again after your first appeal.

Your request for appeal must be made in writing within 60 days from the date you receive the unfavorable notice. (Under certain conditions, SSA may grant an extension of time to file an appeal.)

Your benefits amount is entirely dependent on how much FICA (payroll tax) you contributed during your working life.
Contact information?
Social Security Disability Insurance: ssa.gov or call toll-free 800-772-1213 for recorded information 24 hours a day, in both English and Spanish. Social Security representatives are available Monday through Friday from 7 a.m. to 7 p.m. Eastern time.
SAFETY NET 2
Q. If I become unemployed, what happens to my health insurance?
A. COBRA can help you cope.
What is this? The Consolidated Omnibus Budget Reconciliation Act (COBRA) health benefit provisions law allows certain former employees, retirees, spouses, former spouses, and dependent children to temporarily continue health coverage at group rates when coverage is lost due to certain specific events.
What agency has oversight? COBRA laws are administered by several agencies: Department of Labor; Department of Health and Human Services (HHS); Internal Revenue Service; Department of the Treasury; and Centers for Medicare and Medicaid Services.
How does it work? COBRA beneficiaries generally are eligible for group coverage during a maximum of 18 months. To be eligible, you must have been enrolled in your employer’s health plan when you worked, and the health plan must continue to be in effect for active employees. (The American Recovery and Reinvestment Act of 2009 provides a premium reduction to certain qualified individuals and expanded eligibility for COBRA. For more information, go to www.dol.gov/ebsa/faqs/faq-cobra-premiumreductionEE.html or call toll-free 866-444-3272.)
Net notes 
COBRA group health coverage is usually more expensive than health coverage for active employees. However, it is usually less expensive than individual health coverage.
COBRA applies to private-sector employers with 20 or more employees, employee organizations, or state or local governments. (Federal employees are covered by a law similar to COBRA; contact your personnel office for more information.) If you have been working for a smaller organization, or for yourself, you are not eligible for COBRA coverage.
Once your employer notifies you about your rights to COBRA continuation benefits, you must elect COBRA coverage by the 60th day after the notice is sent or the day your health care coverage ceased, whichever is later. Otherwise, you lose your rights to COBRA benefits. You may qualify for longer periods of COBRA continuation coverage if the Social Security Administration has ruled that you became disabled within the first 60 days of COBRA continuation coverage.
Contact information?
To learn more about COBRA’s criteria for plans, qualified beneficiaries, and qualifying events, go to
www.dol.gov/ebsa/faqs/faq_consumer_cobra.html.
U.S. Department of Labor
Frances Perkins Building
200 Constitution Ave., NW
Washington, DC 20210
Toll-free: 866-444-3272
TTY: toll-free 877-889-5627
E-mail:
Go to askebsa.dol.gov/SecInit to send e-mail using an online form.
SAFETY NET 3
Q. I keep getting denied for health insurance coverage because of my lupus diagnosis. What can I do?
A. The new PCIP prevents this type of denial.
What is this? The Pre-Existing Condition Insurance Plan, or PCIP—a law under the 2010 health care reform—makes health insurance available to individuals with pre-existing health conditions. A pre-existing condition is defined as a condition, disability, or illness (either physical or mental) that you had before you enrolled in a health plan.
The PCIP covers a broad range of health benefits, including primary and specialty care, hospital care, and prescription drugs. Your eligibility is not based on income. The PCIP will be available in every state, but the program may vary depending on your state.
Coverage for children (under age 19) began immediately. For adults who live in a state where HHS is running the program, enrollment began on July 1, 2010. In all other states, the exact start date will vary by state.
In 2014, people of all ages will have affordable health insurance choices through a new competitive marketplace called an “exchange” and will no longer be discriminated against based on a pre-existing condition.
What agency has oversight? Either the state where you live or HHS.
As of October 2010, the following states will offer a Pre-Existing Condition Insurance Plan managed by HHS: AL, AZ, DC, DE, FL, GA, HI, ID, IN, KY, LA, MA, MN, MS, ND, NE, NV, SC, TN, TX, VA, VT, WV, and WY.
The following states will run their own Pre-Existing Condition Insurance Plan: AK, AR, CA, CT, CO, IA, IL, KS, MD, ME, MI, MO, MT, NC, NH, NJ, NM, NY, OH, OK, OR, PA, RI, SD, UT, WA, and WI.
How does it work? Every state will have a plan that offers comprehensive health coverage for uninsured Americans with pre-existing conditions. The program name, start date, and other plan details may vary depending on your state and who runs the program. If you live in a state in which HHS is running the program, generally, a completed application received on or before the 15th of the month will go into effect on the first day of the next month. A completed application received after the 15th of the month will go into effect on the first day of the second month.
How does it help a person with lupus? “The new federal pools [like PCIP] provide an opportunity for people who don’t have access to employer-sponsored coverage—and have health conditions such as lupus—to get health insurance without paying an extra cost,” explains Janet Trautwein, CEO of the National Association of Health Underwriters, headquartered in Arlington, VA. State-by-state enrollment limitations apply, so check out what is available in your state to ensure that you will be accepted into the program.
Net notesYou must be a U.S. citizen or U.S. national or lawfully present in the United States. You must have proof of insurance denial due to a pre-existing condition.
You are not eligible for the PCIP unless you have been without health coverage for at least the past six months. (Other eligibility criteria may also apply.) If you have job-based coverage or individual insurance coverage, you are not eligible to apply for PCIP. 
Other resources
The PCIP will have provider networks that include a full range of services and specialists. If you have limited income and resources, you may be eligible for the Medicaid program in your state.
Go to www.cms.gov/MedicaidEligibility for more information. If you are seeking insurance coverage for your child, go to www.insurekidsnow.gov to learn more about children’s health insurance in your state.
Contact information?
Call toll-free 866-717-5826 (TTY 866-561-1604) Monday through Friday, from 8 a.m. to 11 p.m. Eastern time, or go to www.pcip.gov/StatePlans.html.




Lupus Now(R) magazine is published three times per year by the Lupus Foundation of America.  Your subscription not only brings to your mailbox the only national magazine dedicated exclusively to lupus, funds generated from subscription sales also help support other LFA programs, such as research, education, awareness, advocacy, and patient services.  Consider purchasing a subscription now and help support programs that benefit all people affect by lupus.  A subscription also is included as a member benefit when you join an LFA chapter










Drug Assistance Programs

http://www.lupusalliance.org/resources.asp 


















 

Employment and Disability










 

Government Agencies







 

Health Insurance and Dental Plans







 

Health Related Organizations













 

Internet Savvy

http://healthwellfoundation.org/ For financial help with medications and health care.







 

Kids Links




















 

Scientific Journals & Medical Organizations






 

Sun Protection and Other Products















 

Traveling Abroad with a Chronic Illness