I was diagnosed with lupus seven years ago, and so far I have only had arthritis and fatigue. I know that it can also affect the organs but how will I know this? Do I have to have a blood test or will I start to get sick, or what? And does it always end up like that, or can you have a normal life and have lupus. And what is a normal life expectancy? I am not on any medications for it, and there is no family history of Lupus. Wow...I'm sorry for the answers above...some of them are slightly misguided about Lupus...especially the first one. My wife and I have been dealing with Lupus for over 15 years. She has SLE with organ involvement, meaning that her immune system has attacked her organs (kidney and heart so far). There are only two different kinds of Lupus (excluding neo-natal which really isn't Lupus at all), Discoid and Systemic. Discoid only affects the skin and never attacks organs or anything else. It is NOT signified by the 'butterfly' rash that SLE patients can get (my wife has never had a butterfly rash).
And to dispel another myth...by the person in the first statement who has RA...there are similiarities of RA and Lupus as they both are IMMUNE diseases and share a common symptom, achy joints, but that's where the similarities stop. Collegen has nothing to do with Lupus (I cannot speak for RA as I am not an expert in that disease).
Study after study has shown that prophalxis antibiotics (given when there is no infection, just as a preventative measure) are NOT indicated in the treatment of Lupus and may actually be detrimental as bacteria become immune to the drug and then there is one less drug in the arsenal to treat any infection that may be brought on by Lupus. So don't rush out to your doctor and demand antibiotics.
Sorry about that, I had to dispel any confusion that the first answers may have created. Now on to the krux of your question...YES...you can expect a 'normal' life expectancy if Lupus hasn't attacked your organs. Many, many patients with Lupus never have their organs become involved and if they do usually the first ones it attacks are the kidneys. Even though my wife has serious organ involvement she still leads a fairly 'normal' life (other than taking many different kinds of medications). She is a dentist and a mom (both of our kids are adopted) and enjoys life to the fullest. There are times she's tired and needs to take a rest and other times when she's just fine. Stress is a major contributor to Lupus flare ups and worrying about your Lupus may actually make it worse, so don't fret too much.
You need to see your doctor regularly. You should be seeing a rheumatologist as they are the front runners in treatment of Lupus. They will continue to monitor your blood for specific things such as GFR, Compliment levels and the like and may also take urine tests to check for creatine clearance. These would be initial indicators that your kidneys are in distress.
Have you ever taken medications? When you were first diagnosed what were your symptoms and how did the doctors treat them? I'll give you a run down on some of the medications you can take for Lupus presently. Hopefully you'll never need them but they can work wonders if your Lupus begins to escalate. Prednisone (steriod used for inflammation...very nasty long term side effects but one of the best for treating flare ups in the joints), Cellcept (inititally used in organ transplants but found to work well in keeping the immune system in check)...it's cousin Myfortic...just time released Cellcept. Cytoxan (a chemothreapy medication used when kidney function is really out of whack, also this medication has serious side effects such as infertility), Rituxan (another chemotherapy medication initially used to treat RA but found to work well with Lupus, much fewer side effects than Cytoxan), Plaquinil (malarial drug that was widely used before Cellcept, that also helped keep the immune system in check, not used by doctors who are current in treating Lupus). Then of course all the other medications used to treat complications of Lupus, blood pressure meds, anti-depressants, etc...
Sorry to take up so much space but if you ever have any additonal questions about Lupus and it's treatment please do not hesitate to email me. If I don't have the answer I'll find it for you. Lupus is a rheumatic disease, best treated by adding antibiotics to your current medications.
Rheumatic diseases are the result of a defective gene and collagen inflammation, often from a chronic infection. Collagen is present throughout the body, from the eyes, skin and joints to the heart. Hence, the multiplicity of symptoms, depending on the location of the most affected internal organs or body parts.
I have had seronegative rheumatoid arthritis for more than 27 years. The telling signs of seronegative rheumatoid arthritis are the following:
- Joint pain in the feet (or cracking ankles) in the early 20's or late teens;
- Fatigue, especially after a moderate exercise like a 30 minute walk;
- Blood test showing a negative or low level of Rheumatoid Factor (RF);
- Joint deformities of the fingers, after a few years, a specific sign of rheumatoid arthritis;
- Consecutive X-Rays, over several years, showing bone erosion, a consequence of rheumatoid arthritis;
- Generalized arthritis, involving the whole body;
- Blood tests showing elevated levels of C-Reactive Protein (CRP) and Sedimentation rate (ESR).
NSAIDs like Voltaren, COX-2 inhibitors like Celebrex, acetaminophen like Tylenol, codeine and Lipitor are all used to control inflammation and relieve the pain of arthritis.
Regular exercise like walking, biking and swimming is also helpful for most patients. Make sure that you are not overweight as carrying too much weight can only increase the pain of arthritis in the supporting joints of the hips, knees, ankles and feet.
For any form of rheumatic disease, including lupus, you should consult an orthopaedist who will order blood tests, joint scans and X-Rays to better diagnose the type of rheumatic disease from which you suffer.
The American Academy of Orthopaedic Surgeons at http://www.aaos.org maintains a public online directory where you can find the address and phone number of orthopaedists who belong to the American Academy of Orthopaedic Surgeons. Orthopaedists are listed by geographic location and family name, inside the USA and in most countries.
The membership directory of the AAOS is located at:
http://www6.aaos.org/about/public/member...
The American Academy of Orthopaedic Surgeons maintains a wealth of information online at:
http://orthoinfo.aaos.org
Lyme disease could be a possibility. Ask your doctor to test you for the bacteria causing Lyme disease.
Are there any other cases of lupus, arthritis or rheumatic diseases among your relatives? Chronic forms of lupus and rheumatic diseases are usually prevalent in families where a defective gene is passed on by parents to their children.
There are a few hundred types of arthritis and rheumatic diseases. The good news is that science is progressing rapidly in its understanding of rheumatic diseases.
Antibiotics are now used to achieve full remissions for patients with lupus. The same is true for rheumatoid arthritis where a minimum of 40%, if not 65% of patients with rheumatoid arthritis can achieve full remissions. For more info, please join the antibio group at:
http://health.groups.yahoo.com/group/ant... I hope this helps you.
Each person with lupus has slightly different symptoms that can range from mild to severe and may come and go over time. However, some of the most common symptoms of lupus include painful or swollen joints (arthritis), unexplained fever, and extreme fatigue. A characteristic red skin rash (the so-called butterfly or malar rash) may appear across the nose and cheeks. Rashes may also occur on the face and ears, upper arms, shoulders, chest, and hands. Because many people with lupus are sensitive to sunlight (called photosensitivity), skin rashes often first develop or worsen after sun exposure.Common Symptoms of Lupus
Painful or swollen joints and muscle pain
Unexplained fever
Red rashes, most commonly on the face
Chest pain upon deep breathing
Unusual loss of hair
Pale or purple fingers or toes from cold or stress (Raynaud's phenomenon)
Sensitivity to the sun
Swelling (edema) in legs or around eyes
Mouth ulcers
Swollen glands
Extreme fatigue
Symptoms of lupus can range from mild to severe and may come and go over time. Other symptoms of lupus include chest pain, hair loss, anemia (a decrease in red blood cells), mouth ulcers, and pale or purple fingers and toes from cold and stress. Some people also experience headaches, dizziness, depression, confusion, or seizures. New symptoms may continue to appear years after the initial diagnosis, and different symptoms can occur at different times. In some people with lupus, only one system of the body, such as the skin or joints, is affected. Other people experience symptoms in many parts of their body. Just how seriously a body system is affected varies from person to person.
Is It Lupus?
Systemic Effects
The following systems in the body also can be affected by lupus.
Kidneys: Inflammation of the kidneys (nephritis) can impair their ability to get rid of waste products and other toxins from the body effectively. There is usually no pain associated with kidney involvement, although some patients may notice swelling in their ankles. Most often, the only indication of kidney disease is an abnormal urine or blood test. Because the kidneys are so important to overall health, lupus affecting the kidneys generally requires intensive drug treatment to prevent permanent damage.
Lungs: Some people with lupus develop pleuritis, an inflammation of the lining of the chest cavity that causes chest pain, particularly with breathing. Patients with lupus also may get pneumonia.
Central nervous system: In some patients, lupus affects the brain or central nervous system. This can cause headaches, dizziness, memory disturbances, vision problems, seizures, stroke, or changes in behavior.
Blood vessels: Blood vessels may become inflamed (vasculitis), affecting the way blood circulates through the body. The inflammation may be mild and may not require treatment or may be severe and require immediate attention.
Blood: People with lupus may develop anemia, leukopenia (a decreased number of white blood cells), or thrombocytopenia (a decrease in the number of platelets in the blood, which assist in clotting). Some people with lupus may have an increased risk for blood clots.
Heart: In some people with lupus, inflammation can occur in the heart itself (myocarditis and endocarditis) or the membrane that surrounds it (pericarditis), causing chest pains or other symptoms. Lupus can also increase the risk of atherosclerosis (hardening of the arteries).
Pregnancy For Women With Lupus
Although a lupus pregnancy is considered high risk, most women with lupus carry their babies safely to the end of their pregnancy. Women with lupus have a higher rate of miscarriage and premature births compared with the general population. In addition, women who have antiphospholipid antibodies are at a greater risk of miscarriage in the second trimester because of their increased risk of blood clotting in the placenta. Lupus patients with a history of kidney disease have a higher risk of preeclampsia (hypertension with a buildup of excess watery fluid in cells or tissues of the body). Pregnancy counseling and planning before pregnancy are important. Ideally, a woman should have no signs or symptoms of lupus and be taking no medications for at least 6 months before she becomes pregnant.
Pregnancy And Arthritis: Overcoming The Difficulties
Women With Lupus Have Greater Pregnancy Complications
Some women may experience a mild to moderate flare during or after their pregnancy; others do not. Pregnant women with lupus, especially those taking corticosteroids, also are more likely to develop high blood pressure, diabetes, hyperglycemia (high blood sugar), and kidney complications, so regular care and good nutrition during pregnancy are essential. It is also advisable to have access to a neonatal (newborn) intensive care unit at the time of delivery in case the baby requires special medical attention. Do you know which form of lupus you were diagnosed with? There are several different forms. My husband has cutaneous lupus, and sjogrens syndrom, which is a cousin to lupus. There is a form that has to do with your inside organs (systemic), your skin,(cutaneous) etc.You need to see a GOOD rheumatologist that also specializes in lupus. We see a great doctor at University of Medical Sciences in Little Rock, Arkansas, Dr. Lipsmeyer. I can tell you that when my husband first got sick, he ignored how bad he felt and worked everyday until he collapsed, literally. He spend the next 9 months in bed sleeping 24/7 because of the chronic fatigue and was in so much pain, he slept in a fetal position. I thought he was going to die. First thing, see a good doctor. Do not put this off. There is a medication that my husband starting taking, and still takes 2 times a day called Plaquenil. He turned down the prednisone. It took about 6 months for the plaquenil to start working, but you have to remember he went too long before giving in and seeing a specialist. If you get help now, there is a good chance that you will be able to live a very close to normal life.There is however no cure. You have to learn your limitaions. My husband is now on disability. I am guessing that you know that lupus is an autoimmune disease. There are also some otc vitamins that he has to take everyday.....vit. B complex, vit. B12, Zinc, Calcium containing vit. D, vit. C and Omega 3 is another one. He should be taking vit. E, but it interferes with his heart med. When you have an autoimmune disease, it makes it hard for your body to "throw" off viruses, etc. Your immune system becomes confused and doesn't know right from wrong, to put it simply. My husband was told by his doctor to not even go to the nursing home to visit my dad. Use the internet and go to as many lupus sites as you can find to learn important info. See what foods are reccommended for a good healthy lupus diet. Stress is also a factor in causing lupus flare ups, and so is working too long so that you tire out before you know it, and please stay out of the sun. Any of these three things can cause a lupus flareup( extreme chronic fatigue that puts you down) along with an awful rash. The bright side of the story is, there is alot of info out there. I believe you can go to the American arthritis site and ask for booklets that they will send you for free. You should not worry about the life expectency, it has much improved along with how to manage this disease. I wish you the best of luck. Just remember to take care of yourself. You need to get information and read it all, more than once. It is the only thing that helped me understand so that I could get my husband back on his feet. He waited too long, please don't do that. Take care. |
