"Men & Lupus" Chat Transcript for Dr. Mary Anne Dooley

Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Mary Anne Dooley.

Dr. Dooley received her M.D. from the University of North Carolina (UNC) School of Medicine and received her M.P.H. in Health Administration and Policy from the UNC School of Public Health shortly afterwards. She did her Internal Medicine Internship and Residency at the University of Massachusetts, and came back to North Carolina to do her Rheumatology Fellowship at Duke University Medical Center. She is currently an Associate Professor Medicine in the Division of Rheumatology and Immunology at the University of North Carolina in Chapel Hill (UNC-CH), and the Director of the UNC Rheumatology Lupus Clinic.

Dr. Dooley’s research interests lie in the area of clinical investigation and outcomes research in systemic lupus erythematosus with publications focusing on environmental and hormonal risks and outcomes for lupus and lupus nephritis. Dr. Dooley also has focused on racial disparities in outcomes of lupus nephritis. She is a member of the Glomerular Disease Collaborative Network, which is a collaborative research effort between private practice nephrologists from the southeastern United States and the Division of Nephrology and Hypertension at UNC-CH. In her research, she has been able to highlight the racial disparities in response to therapy. Dr. Dooley’s ongoing research is focusing on metabolic differences in the P450 cytochrome system that may predispose individuals to respond better to certain immunosuppressive therapies. Dr. Dooley also was the co-investigator of the Carolina Lupus Study, a two year population-based, case control study of lupus, which addressed hormonal and environmental risks for the development of lupus.

We welcome Dr. Dooley, and thank her for joining us this afternoon.

Without further delay, let's begin. The first question comes to us from Michigan. Is it a true statement that people, especially men, who have enlarged lymph nodes, have a higher risk of cancer? -- Lansing, Michigan

Dr. Dooley
Enlarged lymph nodes are a common finding in lupus. The studies suggest that, on average, enlarged lymph nodes caused by lupus are present at some time in about 50% of lupus patients. They are more common in children and African Americans. I am not aware of any long term studies that have followed patients with lymphadenopathy to determine an actual risk of lymphoma for these patients.

There has been a large, almost 10,000 patient, study among lupus centers from around the world that looked at the risk of cancer in lupus patients. Lupus patients are at increased risk of lymphoma (cancer of the lymph nodes) or leukemias, but not of all cancers. There is decreased risk of breast and endometrial cancer for example. While the risk of lymphoma is greater than in the normal population, this is a rare cancer.

Moderator
I am a male with SLE for the past 12 years. I got off the steroids and have been on CellCept. Is there a better drug to deal with my progressive kidney problems? -- La Pine, Oregon

Dr. Dooley
Cellcept is a good drug to control the active inflammation from lupus in the kidney. However when you have kidney damage, other processes may decrease kidney function too. High lipids, diabetes or hypertension can cause loss of kidney function even when the lupus in not active. So you need to work with your doctor to keep these factors under good control. Regular follow up is also necessary to be sure you aren’t flaring.

jon
I was diagnosed with SLE last September (I'm a 55-year old male). My symptoms crashed onto me like a ton of bricks, everything coming on within about 2 weeks. My rheumatologist was able to get this under control quickly with prednisone and Plaquenil (I've been off prednisone since January). "Moderate" exercise is part of my recommended therapy -- I'm concerned that I might be overdoing it. I'm physically preparing for a backpacking trip in New Mexico later this summer, and have been hitting the arc-trainer hard. Could I be doing myself harm by over-exercising? Other than occasional fatigue, I feel like I'm about 97% of where I was a year ago... and I thank God I don't have this as bad as most lupus patients.

Dr. Dooley
Moderate exercise is not likely to be associated with any change in your lupus activity as long as it is appropriate to your conditioning. Exercise in general is good in lupus, as it improves fatigue and helps prevent heart disease and diabetes. So, if you've been training for it, have fun!

Moderator
Does discoid lupus cause erectile dysfunction or other debilitating symptoms? -- Chicago, Illinois

Dr. Dooley
Discoid lupus by itself does not cause loss of libido. A certain percent of patients with skin only lupus may develop systemic lupus over time. The risk is considered 10% if ANA negative, 25% if ANA positive. Many treatments for conditions can cause change in libido … blood pressure medications and high dose steroids among them.

Moderator
Is it common for men to experience a loss of libido? I've been shocked at my lack of interest in sex. -- Tacoma Park, Maryland

Dr. Dooley
Decreased libido in men with lupus is common, for many reasons. First … it is psychologically always difficult when you are diagnosed with a long-term illness that can affect your health and insurance status. Also, because lupus is more common in women, that can be a challenge for some men to accept.

Then, some manifestations of lupus are treated with Cytoxan that can damage the testes, resulting in less testosterone. This can be treated with hormone replacement. Blood pressure medications are associated with loss of libido, or erectile dysfunction. It is important to talk to your doctor frankly, and change (if possible) to something that doesn’t affect you that way. Also hardening of the arteries can cause erectile dysfunction, and men with lupus are at high risk of atherosclerosis. Again minimizing diabetes which can cause nerve damage, and trying other meds also helps.

mavili
Since lupus is so much more prevalent in women, what is the current thinking about a potential link to hormone levels?

Dr. Dooley
There are certainly a lot more women with lupus than men, but female hormones are not the only things different between men and women. Hormones may play a role, but there are many other factors that are probably more important. Although some animal models of lupus have shown that hormones can make the disease worse, the results are not consistent for all models. Also, a recent study called the SELENA study looked at the safety of estrogens in female lupus patients. It did not find any increased risk in severe flares for women who were given hormone replacement therapy or estrogen containing birth control pills. More recently, attention has been focusing on the CD40L gene which is on the X chromosome. Some investigators show that having a certain type of the gene or 2 copies of the gene (women are XX, men XY) may be the risk factor.

Mary Jane
My husband and I have six children. I have a 14 year old son with lupus nephritis. He was diagnosed 2 years ago in September by Drs. Ruth, Orak, and Gilkeson. My daughter was diagnosed in 2005. We are now facing the possibility that our 11 year old son may have autoimmune disorder as well. What are the risk factors for siblings? Odd we have two, but a third? What are the odds?

Dr. Dooley
It certainly sounds like your family has been challenged with so many having autoimmune disorders. In general, the risk of having lupus is about 0.1% for the general population. Lupus is more common in African Americans; three times as many African Americans as Caucasians are affected. Hispanics and Asians also develop lupus more frequently. So if you are an African American woman, the risk may be closer to 1 in 250 than 1 in 1,000. The same ranges may apply to families. The genes for increased risk for autoimmunity in general are likely shared and there may be more rheumatoid arthritis, thyroid disease and other autoimmune disorders. If you have a first degree relative with lupus (such as a brother, sister, mother), the chance is 2-5%. If you have an identical twin with lupus, the chance is 30-50%. The more genes you have in common, the higher the risk but as you can see, there are more than genes involved. There are environmental factors that are important to the development of lupus. Just exactly what those factors are is not clear. Some genes do also greatly increase the risk.

mavili
Are there clinical manifestations of lupus that are much more common in men than women?

Dr. Dooley
Men and women in general can have many of the same lupus features, though the frequency can vary. For example, men are more likely to experience renal (kidney) involvement. But there is such a range of features for both men and women that what you can observe in a large group doesn’t help you know what that individual patient will have. We have to follow and be alert to possible features developing.

jon
What's the relationship between the aging process and lupus progression? As I age, can I expect to change medications or dosages? And how might this affect my life expectancy?

Dr. Dooley
The relationship between aging and lupus activity is complex. We all age and will eventually pass away. We know that individuals do seem to age differently. For example, some have more rapid changes than others, while some families may have longer lived relatives than others. There is not a "break" to lupus activity with age, unfortunately. So in terms of risk of activity, you may need to continue or receive another course of medicine for a particular feature just as you did when you started. However, kidney and liver function change with normal aging and your medicines may be changed to reflect that. Also if you have taken some drugs over time, they may decrease how much medicine you may need in the future. In terms of lifespan, the goal is to treat activity as soon as possible with enough medicine to resolve the activity and maintain function. Chronic renal disease, diabetes, and heart disease can all decrease your life span, and may be lupus or lupus-therapy related.

Tommy
What are your thoughts on the drug Rituxan for treating lupus?

Dr. Dooley
Rituxan can be a helpful drug in individual patients with lupus. Unfortunately, the clinical trial did not show an overall benefit. But the studies excluded many patients whom lupus doctors tend to treat with Rituxan: those with renal disease or nervous system disease. There have been reports from very good doctors of groups of patients who have responded well to the therapy and I have certainly used it to good effect. But the role is when other therapies have failed. It is also sometimes a problem that the drug is not fully humanized; there are still small amounts of mouse protein. It is possible to have a good response to the first dose, but not to the second or third dose. Also lupus patients may not respond at all, or may develop an allergic reaction. So it has a role and I think B-cell depleting drugs will be important, but we don’t have strong clinical trial data.

Mary Jane
My 14 year old had 6 rounds of cytoxan from age 12 to just past his 13th birthday, and one round of Rituximab. I know the chemo can cause sterility … do you know percentages? Or is this too vague, as I don't recall the actual strengths.

Dr. Dooley
Unfortunately, children who have lupus more commonly get kidney involvement and more likely relapse, so they often have to be treated with the greatest amount of therapy. Cytoxan is associated with damage to the ovary or testes. For both girls and boys, the dose of cytoxan and the age of the patient are very important in risk of damage. In girls before puberty, there may be less damage than in women; there is greater risk to >30 year olds than <24 year olds.

However for boys before puberty, there has no protective effect. There are several ways to decrease the risk of gonadal toxicity in patients who must get cytoxan. This is also a big focus for the NIH now too; there are 5 centers offering several approaches in the US. Rituxan risk to the gonads is not known, and hasn’t been investigated much yet. It doesn’t have the same mechanism of action as cytoxan, but as it was developed for lymphoma patients who tend to be older, not much data on gonadal risks is available.

wing
DHEA was a mantra at a recent lupus symposium I attended. What are your thoughts?

Dr. Dooley
DHEA is a supplement that many have taken or read about. For some patients, it seemed to work really well and improve quality of life. However in a controlled clinical trial, it did not work better than placebo. It is possible to measure DHEAS levels in the blood and know if a deficiency is present. DHEA is a weak androgen -- male hormone -- so side effects are acne, increased lipids, increased facial hair etc.

Moderator
I read that women have increased incidence of coronary artery disease if they have lupus. Does this also apply to men? -- Woodbridge, VA

Dr. Dooley
Yes, men are at great risk for heart disease, as lupus is an added risk to other traditional risk factors like family history, diabetes, cholesterol etc.

Samer
My son is 6 ½ years old, and had acute arthritis symptoms 5 months ago. It started with migrating joint swelling and painful swelling, itchy red rash over his body for 2-3 days. After seeing the doctor, we found that he has positive ANA 1:160 Speckled pattern, his ESR was 30, but CRP, ASOT, were negative. We repeat all the related tests to rule out rheumatic fever, or juvenile rheumatoid arthritis. The results were as follows: ANA: 1/1280, ADNs Negative, ENA (SSA, SSB, and SM) also negative. His ESR was 6, 2 days after we repeat the ESR, it was 8. ANA also repeated two weeks after but it showed the same result 1:1280. Kidney function tests were normal, Anti CCP was normal, Cystatin C was normal, C3 and C4 were normal. My son complains of mild fatigue, and low grade fever, and sometimes of knee joints pain. His CBC parameters are also normal. The pediatric rheumatologist diagnosed him as SLE but he didn't start any medication but Ibuprofen until we repeat all the mentioned tests.

Dr. Dooley
The ANA is not always straightforward and in children especially. ANAs are part of a response to infection and children can get high levels from certain viral illnesses. Lupus does not have a single treatment strategy; it depends on what is active at the time. Prednisone can help patients but causes growth delay in children. If arthritis is the primary feature, often NSAIDs work well and may be the least risky choice. It is important to follow with a pediatric rheumatologist if possible as it can be very difficult to diagnose and treat children with lupus.

Moderator
Would you recommend preventative cardiology referrals to assess cardiac risk factors for men? – Winter Springs, Florida

Dr. Dooley
Recognizing that patients with lupus are at increased risk for cardiovascular disease is important. Many rheumatologists monitor patients carefully and recommend preventive therapy like statins, tight control of disease activity, blood pressure at 120/80 and normal blood sugars. They also recommend NO SMOKING. Often heart tests like an echocardiogram are done to assess function and inflammation. Cardiology referral is necessary when the patient has symptoms that raise concern for vascular disease and I have a very low threshold to send patients for evaluation.

colleen
My son died 2 years ago from infection after receiving chemotherapy to treat his lupus. Please warn young men about this. He was 34.

Dr. Dooley
I am sorry to hear about your loss. We do not have good drugs to treat lupus, especially when it is severe and must be treated with chemotherapy or other strong drugs. Young men are at the highest risk of dying with lupus, sometimes from the disease activity and sometimes, unfortunately, from the drug effects. Other than Plaquenil, we have no drugs that treat lupus inflammation without increasing the risk of infection. Again, I am sorry for your loss. It makes me remember more than one young man I have lost to this disease.

Moderator
That is all the time we have for today’s chat. Thank you to Dr. Mary Anne Dooley for joining us.

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