You might think it means that lupus is gone for good, but it's not that simple. Here's what it really means when lupus is in remission.
The medical definitions for remission do not work always for lupus. Sometimes, remission means that your symptoms, blood work and physical exams are normal and stay that way for a time. When this happens, your doctor may feel that you never had lupus, but had another condition that caused your symptoms.
Another definition of remission is that you are on medications and you are doing great with little or no evidence of the usual lupus symptoms. Remission, however, does not always last and you may again experience the pain and suffering of lupus. Remission is different for every patient and depends on how your doctor defines remission.
For example, one patient was diagnosed with juvenile arthritis had swollen joints, fatigue, and pain. She was put on NSAID anti-inflammatory medications. They did nothing to help her symptoms, and she moved through her high school career in pain. Then in 2000, she was diagnosed with lupus and doctors soon prescribed prednisone. Yea! Prednisone helped immensely, and all her symptoms vanished. She was told she was in remission.
It’s been over 15 years since her lupus diagnosis, and she experiences multiple fractures in both feet, osteopenia in her lower spine and a tear to her plantar fascia. She can barely type because her right elbow is swollen up for no reason.
She is still considered to be in remission and has no lupus symptoms. However, she does have side effects of medications and lupus complications.
Should remission mean that there is an end to the pain, fatigue and you can stop your medications? It would be nice, but remission is different for everyone. As mentioned before, it just means that lupus is not detected in your bloodstream.
However, the damage caused by lupus and the side-effects of medications and treatment will cause you problems years after you are technically in remission. The lady used in the above example was in remission for almost two years. She had bloodwork free from lupus, but her kidneys were failing, and they had to be biopsied. The doctors found active lupus in her kidneys only. This is why it is vital to get tested regularly, and to keep taking your meds and listen to your body. Maybe, forget the remission diagnosis.
Prednisone is a common medication, but it has side effects. You may experience bloating, weakening of the skin, and weak muscles and bones. Prednisone stays in your system for months after you have stopped taking it, but the side effects are still there. Side effects of prednisone are different for everyone, and other symptoms can include vertigo, fractures, atrophy, and a multitude of other symptoms.
Other medications that might put your lupus “into remission” include hydroxychloroquine or non-steroidal anti-inflammatory meds like ibuprofen, naproxen or Celebrex. You might also be asked to lower your doses of immunosuppressant medications like methotrexate since there are no “lupus” markers in your blood and fluid tests.
Think about what your remission looks like. If you are “in remission” but still have joint aches, fatigue and other debilitating symptoms, talk to your doctors. Know what remission means. Ask your doctor for the risks and potential rewards of your treatments.
What Is Lupus?
Lupus is a disease that can affect anyon,e but is usually diagnosed in young women between the ages of 15 and 44. The causes of lupus are not known, but it is an autoimmune disease where your immune system attacks healthy cells by mistake. Mistakes by your immune system can damage many parts of your body. Effective treatments might put you into remission.
The most common symptoms of lupus include malar rash, joint swelling, fatigue, and unexplained fevers. Almost 90% of those with lupus have fatigue as one of the primary symptoms. Fatigue may be caused by disease activity, anxiety disorders vitamin D deficiency, sleep disturbances or low levels of exercise. Some researchers believe there is a relationship between fatigue and lupus, plus the treatments used to manage the disease.
Fatigue significantly affects your quality of life. You have a hard time functioning at home and work.
Malar rash occurs in about 50% of those with lupus. It is a rash or color change that appears across your cheeks and bridge of the nose. It is often in the shape of a butterfly. The rash may last only a few days or up to weeks. It is usually itchy and painful. You may also have rashes on your face and ears and other parts of the body exposed to sunlight. Photosensitivity or sensitivity to sunlight often worsens after patients are out in the sunshine for even short periods of time.
Some of those with lupus notice the appearance of the butterfly rash is a symptom of an imminent flare-up of lupus.
About 90 percent of those with lupus often have arthritis or joint pain and swelling. Those with lupus often experience pain in the joints but don’t have swelling or tenderness, and this is called arthralgia.
Those with lupus often have unexplained fevers or temperatures of 100°F. Your doctor may recommend nonsteroidal anti-inflammatory drugs or NSAIDS like ibuprofen to help with fevers.
There are so many possible complications with lupus. Pregnancy risks like high blood pressure diabetes, hypoglycemia, and kidney complications are possibilities.
Inflammation can occur in the heart or the membranes that surround the heart. Inflammation causes chest pain. Endocarditis can damage heart valves which causes heart murmurs,
When the kidneys become inflamed or nephritis, they can’t get rid of your body’s waste products and other toxins in your body. There is usually no pain with nephritis, but you might notice dark urine, and swelling around your eyes, legs, and fingers. An abnormal urine or blood test is the only ideation of kidney disease. Lupus patients need intensive drug treatments to prevent permanent kidney damage.
If you have lung problems, you can develop pleuritis which is an inflammation of the chest cavity lining. Pleuritis can cause chest pain and difficulty breathing. If you experience lupus, you may be susceptible to pneumonia.
A severe complication of lupus is insulin resistance and diabetes. Corticosteroids are a common treatment for lupus-related inflammation, but corticosteroids interfere with insulin production. If you have diabetes and lupus, you may develop neuropathy or dysfunction of peripheral nerves.
In some lupus patients, the brain or central nervous system may be affected. You may experience headaches, depression, dizziness, memory disturbances, seizures, vision problems stokes or change in mood and behavior.
Antiphospholipid syndrome or APS is an autoimmune disorder that often occurs when you contract lupus. Antibodies or a type of protein help defend your body against infections; however, APS causes the body to make antibodies that attack phospholipids and damage blood cells. Antiphospholipid causes blood clots to form in your veins and arteries which block blood flow.
Another complication is transverse myelitis or inflammation of the spinal cord. Transverse myelitis pain starts in your lower back and shoots down your legs, arms chest or abdomen. Pain symptoms vary, but some people report numbness, tingling, coldness, burning or weakness in arms and legs. You might also have problems with bowel or bladder control.
You may experience blood vessel inflammation with lupus. Inflamed blood vessels or vasculitis affect the blood circulations throughout your body. Vasculitis makes you at an increased risk for atherosclerosis or hardening of the arteries.
With all these devastating complications, remission is a welcome idea. But are you ever in remission with lupus?