15 Questions - Understanding Lupus

1. I had a positive anti-smith antibody test a couple of years ago. I was told that everyone with lupus does not always have this positive test, but everyone with a positive anti-smith antibody has lupus. Is this true? -- Holland, MI

A positive Smith antibody by itself does not mean that a person has lupus. An anti-Smith antibody is one of the important antibodies in lupus, but not everybody with this antibody has or will develop lupus. Whereas the antinuclear antibody is fairly nonspecific, anti-double-stranded DNA antibodies and anti-Smith antibodies more consistently indicate a person has lupus. Sjögren’s A antibodies and ribonuclear protein antibodies are also seen commonly in systemic lupus erythematosus patients. However, a positive lab test is not the same as having the clinical features of lupus. A clinical diagnosis depends on meeting the criteria set up to diagnose the disease. If the symptoms and objective signs and lab findings, including the antibody profile, match up, lupus can be diagnosed with some certainty. Lupus can also be diagnosed on the basis of a biopsy, such as of the skin or kidney. But a positive Smith antibody by itself does not mean that a person has lupus. You can read more about Diagnosing Lupus on lupus.org.

2. Why does it take years sometimes for the lupus symptoms to appear? If the symptoms were to appear sooner, could the disease be prevented all together? I have had lupus for at least three years but the symptoms were not present, or maybe I didn't recognize them, and once I was diagnosed, all sort of problems started to present themselves, so maybe if the symptoms has surfaced sooner, the disease may not have been so aggressive. -- Houston, TX

I’m not sure I understand the question -- why does it take years for lupus symptoms to appear? Lupus is a systemic disease, but not all the symptoms may appear at the same time. Sometimes the skin disease or joint pain or pleurisy or other aspects of the illness can occur sequentially. There is no way to prevent the disease, but early treatment can control symptoms and maintenance therapy may prevent flares. Often during an active phase of the disease, treatment with steroids and/or immune-suppressing medications may be used at higher doses and then reduced to lower doses or discontinued completely after the flare has subsided.

3. If on Imuran and Plaquenil, how long do I have to take prednisone? -- Mequon, WI

There is no specific formula for treatment in lupus. Prednisone is an anti-inflammatory medicine that works with Imuran (an immune-suppressant) and Plaquenil (an immune-modulating medication). The three are often used together. Imuran and Plaquenil help to control lupus, but not as quickly as prednisone. So if you are taking both Imuran and Plaquenil, you may still need prednisone. Check with your doctor about how long you need to take Prednisone. You can read more about Treating Lupus on lupus.org.

4. I have been getting repeat yeast infection, like one a month for a while now. Does my lupus, which is mild I am only on plaquenil, have anything to do with this? All my blood work has been fine, no changes. My GYN has asked me to check with my rheumatologist on this is I'm compromised with my immune system. My rheumatologist said no, does not have anything to do with the recurring yeast infections. I'm so lost and need help. -- Hawthorne, CA

Your lupus really does not have anything to do with getting yeast infections. Lupus patients have an overactive immune system in the sense that the immune response is misdirected and targeted at the body’s own tissues and proteins, but yeast infections are not a part of lupus. They may occur more commonly in lupus patients taking steroids or having to take antibiotics for infections, but not from the disease itself.

5. I have a 20 year old son diagnosed with Antiphospholipid Antibody Syndrome and lupus. He has had three hospitalizations in one year since his diagnosed. What is the prognosis for my son? (He has seizure disorder and lupus pneumonitis as well as atrial fib). I have never seen lupus patient develop so many problems in such a short time span. He is on 50mg of Imuran and 40mg of prednisone, 100mg of depafote, and 75 mg of cardiozem). -- Dallas, GA

Your son’s prognosis depends on whether there is serious major organ involvement or not. Sometimes flares occur and then they subside, and a lupus patient goes into remission. On the other hand, if the lupus lung disease (pneumonitis) is longstanding and severe or if there is significant central nervous system involvement causing seizures and other symptoms, the disease may be more aggressive and require stronger immune-suppressing therapy. Many times lupus patients develop a lot of problems in a short period of time during a lupus flare, but with treatment, the symptoms of both lupus and the antiphospholipid antibody syndrome can generally be controlled.

6. I recently had an MRI of my brain. It showed that I had "atrophy which is advanced for the stated age." There is also white matter disease (stable) and "new hemosiderin deposition in the left temporal occipital region." I was wondering if this was due to lupus or other causes. I also have Sjogren's and anti-phospholipids antibodies. I am 55, on warfarin, probably started with lupus in 2000, as I had some funky blood numbers starting at that time.

The findings of atrophy of the brain and white-matter disease can be seen in lupus patients, but are relatively nonspecific. Lupus is sometimes associated with multiple white spots seen on the brain MRI (sometimes called unidentified bright objects because they look white on the MRI brain scan), but the changes are not specific for lupus. Other tests (blood, brain wave test, spinal fluid) and a clinical, including a neurological, evaluation help to determine if brain lupus is present. Learn more about lupus and the Nervous System on lupus.org.

7. I am 19 years old and I have been living with lupus since I was 12. My question is that my butterfly rash has spread in my face and I also have little zits all over my face and I don't know what they are. -- Atlantic City, NJ

If you are 19 years old, some of the skin problems you are talking about may be due to acne and not lupus. On the other hand, if you do have a butterfly rash that is spread over your face, treatment with topical cortisone creams, Plaquenil, or sometimes low-dose steroid tablets may be helpful. But you need to confirm with a dermatologist or rheumatologist that the rash you have is due to lupus, and then ask about treatment. Read more information about Skin Issues associated with lupus.

8. I am 52 and was diagnosed with lupus last year. I was going through menopause also and I am wondering if hormone changes could bring on lupus. For the past several years I would experience severe arthritis symptoms 2 weeks before my period. -- San Saba, TX

Lupus is associated with a female predominance (more females affected than males), so hormones do appear to play a role. This is also true with most animal models of lupus. On the other hand, since menopause is associated with the loss of female hormones, it is not likely to bring on lupus.

9. What test can be run to determine if mom's latest heart attack is caused by her lupus such as antiphospholipid antibodies? No blockages in coronary arteries greater than 50% so heart doctors are puzzled. -- Nesbit, TN

There does appear to be a significant predisposition to coronary artery disease in lupus patients. This may have a lot to do with chronic inflammation associated with lupus. A research question is whether damage to the inner endothelial lining of blood vessels to the heart is associated with lupus. Anti-phospholipid antibodies are associated with blood clots and can be checked for, but it does not sound like, even if they are present, that they are probably going to be linked to your mother’s heart attack. Although a blood clot may have occurred in one of your mother’s heart blood vessels, unless she has had a series of blood clots in the past, it is unlikely that these antibodies are associated with your mother’s heart disease. You can find more information on Cardiopulmonary Issues associated with lupus on lupus.org.

10. Can a man who has lupus father a child? Could medications that he is on cause birth defects? -- Thomson, GA

A man with lupus can father a child. Men are thought to be less likely to contribute to birth defects than women, because drug exposure to the fetus can occur at very vulnerable periods in fetal development. Nonetheless, it depends what medication you are taking, and certain medications such as cyclophosphamide can affect sperm counts. Talk to your doctor about these medications to be safe.

11. How does a person with lupus arthritis get the pain relief that I need without taking pain medications? I do water exercises and that helps while I'm in the water, but as soon as I am out the pain comes right back. -- Garden Grove, CA

Someone with lupus arthritis can generally get relief from non-narcotic medications, including anti-inflammatory medicines and low doses of prednisone. Some lupus patients have an overlap with fibromyalgia and have widespread pain not directly related to their lupus. You can read more about pain and musculoskeletal system issues associated with lupus on lupus.org.

12. Are pain drugs such as opiates effective for controlling joint pain caused by SLE? Also someone suggested methadone but a Dr. told us that it could cause the SLE to get worse. Is this true? -- New Port Richey, FL

Pain drugs such as opiates are generally not used for the joint pain of lupus. Lupus joint pain and swelling and stiffness can be controlled with anti-inflammatory medicines and low doses of prednisone. Methadone should not cause your lupus symptoms to get worse, but it is a potent narcotic.

13. I have been thinking of volunteering for some of the research projects involving Lupus, but I am unsure as to the safety of the treatments used. How can I check these projects out to ensure that I am as safe as possible? I do realize this is "research" and there are risks involved. I just want to make sure the risks are with a reputable researcher. -- Charlotte, NC

Volunteering for a lupus research project can be extremely helpful in developing new effective treatments for lupus. The reputation of the doctor and the medical center doing the study should play an important role. Reading about the study on the website clinicaltrials.gov (search lupus) can give you a brief outline of what is involved in the study. The LFA has a website -- Center for Clinical Trials Education-- that can help you determine if there is a study right for you.

14. How does lupus differ from Sjögren’s or Fibromyalgia? I know they're autoimmune, but what else differentiates them from one another? And what identifies a diagnosis as one of the above? -- Coventry, RI

Lupus differs from Sjögren’s syndrome in that the two have different symptoms and clinical manifestations. Sjögren’s syndrome is associated with dry eyes and dry mouth, and only occasionally other problems involving the kidney and lung. Lupus is a multisystem disease that does not cause mouth or eye dryness. Fibromyalgia is associated with widespread pain, pretty much throughout the body, as well as poor sleep, cognitive problems, and significant fatigue. Sometimes lupus and Sjögren’s syndrome or lupus and fibromyalgia or Sjögren’s syndrome and fibromyalgia can overlap and a person may have two or even three of these conditions simultaneously.

15. I've had lupus for awhile now. Is it common to run a low grade fever at night? I'm okay during the day but every almost evening I begin running a low grade temp. -- Tellico Plains, TN

Physicians consider a fever as a temperature above 100 degrees, using a reliable thermometer, usually a digital oral thermometer. Many people feel warm at night and may have some temperature elevation later in the day, but not a true fever. So at night, check to see if your temperature is above 100 degrees. If it is above 100 degrees at night, let your doctor know.