"Men's Health & Lupus" Chat Transcript for Dr. Jennifer Grossman
June 11, 2008Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Jennifer Grossman.
Dr. Grossman is a physician in the Division of Rheumatology and an Assistant Professor of Medicine at the UCLA Medical Center. Dr. Grossman holds an MD degree from the University of Rochester School of Medicine and Dentistry and has been practicing medicine for 15 years. Her clinical interests include: lupus, osteoarthritis, osteoporosis, rheumatoid arthritis and vasculitis.
We welcome Dr. Grossman, and thank her for joining us this afternoon.
Moderator
Without further delay, let's begin. The first question comes to us from Georgia.
Can a man with lupus father a child?
Dr. Grossman
Lupus men can father children. Some medications may affect sperm counts and ideally would be better to be off when conceiving a child. The risk of an offspring developing lupus is perhaps on the order of 2-5%.
Moderator
I’m a 44 year old male and have had systemic lupus for 5 years. I take Plaquenil 200mg/day, prednisone as needed, Toprol for blood pressure Ativan 2mg 2xday. I have no major organ activity. My main problem is cloudiness when I get overloaded with work, when I can't solve a problem, when a stressful situation occurs, or when there is a change in the weather. The Ativan helps but then it wears off in about 3 hours and also the Ativan makes me tired, sleepy etc. when I have the cloudiness my blood pressure rises and I feel like my nerves are on edge. I feel like I am totally dysfunctional. Any recommendations of drugs that I could ask my doctor about that would keep my nervous system on an even keel. Do you have any suggestions to ease the lupus fog? Thanks. -- Baton Rouge, LA
Dr. Grossman
Lupus fog is a hard issue. I first will try to identify any contributing factors. Frequently I will check thyroid levels. I will make sure patients are getting adequate and quality sleep. Sometimes I will do formal neuro-cognitive testing and neuro-imaging depending on the symptoms. I would recommend discussing with your physician your fog and what could be contributing to it. It sounds like the Ativan is both helpful and associated with side effects. It also sounds like you have identified some anxiety provoking situations as triggers. Serotonin reuptake inhibitors (also called SSRI) are a class of medications that have been used to treat anxiety and nerves. You may want to discuss these medications with your physicians to see if they would be appropriate for you.
Moderator
Can you please describe the benefits of Plaquenil to manage lupus? What are alternate treatment options in lieu Plaquenil? What are the risks of taking Plaquenil? What are the risks of NOT taking Plaquenil? -- Chester Springs, PA
Dr. Grossman
Plaquenil is often used in lupus patients to help with rashes, ulcers, fatigue and joint pain. The alternative therapies really depend on what you are trying to treat. I try to treat lupus based on an individual’s symptoms rather than the general diagnosis of lupus. The side effects of Plaquenil most commonly are stomach upset, diarrhea, rash. Very rarely, especially when the dose is less than 6.5 mg per kg, is there a chance of eye toxicity. It is very hard to answer the question of the risk of not taking Plaquenil. There has been a Canadian study that suggested for patients who stopped their Plaquenil, there was an increased risk of flaring.
Moderator
How many African American men have lupus in America? Are there any support groups addressing their issues? -- Las Vegas, NV
Dr. Grossman
There was a study done using estimates from a San Francisco study to the 1990 US population that estimated there are 31,000 black males and 163,000 black females, 41,000 white females and 4000 white males with “definite lupus.” Because the number of black men in the San Francisco study was small, it may make the estimate for the US population less reliable. A revised estimate based on 2002 US census data has reported an estimated prevalence of 7,000 African American men with lupus. I think this can give you an idea but it also says I really don’t have an exact number for you. There really isn’t a good number out there. There are some registries in Michigan and Georgia that are trying to look further at this. I am not aware of any support group specifically for African American men.
Steve
How risky is it to stay on prednisone (4 mg) for many years?
Dr. Grossman
That is a good question. We don't have all the answers. At that dose it would most likely increase the chance of osteoporosis (also referred to as thinning of the bones). It would also likely increase the chance of cataracts. How it would affect other conditions such as the risk of heart attacks remains to be determined. In general, I do try to get my patients on as low of a dose as possible and ideally 0, but this is really a decision on a patient by patient basis.
Moderator
For male lupus patients not in flare up mode, a recent CT scan of abdomen showed dozens of enlarged lymph nodes (largest 2.1 cm). None are palpable or large enough to biopsy. How normal of a finding is this in lupus patients? Is it known to what degree this might be a precursor to a lymphoma condition? -- Philadelphia, PA
Dr. Grossman
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.
BK
I am a man who has had lupus for 21 years with kidney involvement. There was a mention of "Lupus Fog." Is that something that can be diagnosed or is it just another general symptom that you have to deal with? I have periods where I feel "foggy" but thought nothing of it.
Dr. Grossman
I think of it more as a general symptom as there are no diagnostic criteria for it. That is to say we don't have a definition for "lupus fog," like we do for lupus nephritis or lupus arthritis. There are things that could contribute to that foggy feeling that are important to explore with your doctor.
jill
Is prednisone used primarily to treat joint inflammation or lupus flare ups in general?
Dr. Grossman
Prednisone is used to treat many aspects of lupus. It can treat joint pain, rashes, kidney, lung, brain problems, etc. Fortunately, it is not specific for any one particular organ part; unfortunately, because it is not specific, it has side effects.
Moderator
I have discoid lupus, and I have many symptoms of SLE. I have had 3 ANA tests done and still no active lupus. Is it possible to have SLE and still have a negative test result? -- Medicine Hat, Canada
Dr. Grossman
ANA negative lupus does exist and is perhaps 2-5% of lupus patients. Some patients who are ANA negative have a positive SSA or SSB antibody. Also, patients with discoid above and below the neck are at increased risk of having systemic lupus, as compared with those patients who have discoid limited to the head and neck areas.
jill
If a patient was prone to side effects of Plaquenil, how long would it take for the medication to produce a side effect? I was told that the medicine could take 4 to 8 weeks to become effective.
Dr. Grossman
Usually the side effects such as the stomach problems or rashes start closer to the time the medication is begun, although theoretically, a reaction can begin at any time. Often, the stomach problems can get better over time or by gradually building up the dose. I have seen the medication take 3 months to work as well.
BK
Have any of the "treatments" or medications for lupus been shown to be more/less effective depending on gender?
Dr. Grossman
Not that I am aware of.
Toosie
Is it likely that you have systemic lupus if you have a positive ANA titer of 1:1280?
Dr. Grossman
The ANA is often called the lupus blood test but that is really not a good name for it. Although most patients with lupus have a positive ANA, up to 5% of the general population has a positive ANA while perhaps about 0.1% of the population has lupus.
A variety of conditions other than lupus can cause a positive ANA, such as rheumatoid arthritis, scleroderma and autoimmune thyroid disease. You are right when you wonder about the high titer. When I see a high titer, I will look harder to find a reason and if I can't find a good explanation, I will still follow individuals periodically as antibodies can appear before the disease fully manifests itself.
Moderator
Does lupus cause circulation problems? I have been getting lots of leg pain and it feels like it is in my veins including some light swelling and joint pain in ankles. -- Newnan, GA
Dr. Grossman
Lupus can cause circulation problems. It can cause the arteries to spasm with Raynauds. Some individuals can get inflammation or vasculitis of the blood vessels. Some patients can also get blood clots in both arteries and veins. Lupus patients also have an increased risk of atherosclerosis (sometimes referred to as "hardening of the arteries"). A good physical exam and some testing can help identify these problems.
BK
If diagnosed with osteopenia - what are some options to slow and/or reverse the course? I am currently taking Fosamax and Oscal.
Dr. Grossman
It can be helpful to look for other causes of low bone density. Lupus patients frequently have low vitamin D levels. Low testosterone levels can also contribute to low bone density. Steroids are frequently a contributing factor. The medications that you are using are frequently used for the treatment of osteopenia. Regular weight bearing activities such as walking and standing are important components of treating osteopenia. Getting follow up bone density studies to monitor the condition can be helpful.
teddy
I have lupus. Does that mean my brothers are predisposed to get it?
Dr. Grossman
In general, the risk of having lupus is perhaps 0.1% for the general population. 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 is more than genes. There are environmental factors that are important to the development of lupus. Just exactly what those factors are is not clear.
teddy
If hormones play a role in lupus, then why do men get it?
Dr. Grossman
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 did not find any increased risk in severe flares for women who were given hormone replacement therapy or estrogen containing birth control pills.
Toosie
What does "undifferentiated" connective tissue disease mean? Does it mean you have features of lupus, scleroderma and dermatomyositis or that you have more than one CTD?
Dr. Grossman
There really is no agreed upon definition for this. What is usually meant by the diagnosis is features of an autoimmune disease such as the ones you mention, but not enough to fulfill the definition of that condition. It is often used when patients have some features of more than one disease.
jill
Are there any indicators in the early years after a lupus diagnosis that give prognostic indication on disease progression? Either in bloodwork or symptoms?
Dr. Grossman
There is really no way to predict what features will develop. One factor that can be helpful if individuals have kidney involvement is the creatinine level. If the creatinine levels are rising, that is a risk for kidney failure. If patients have lung involvement, following breathing tests and x-rays can be helpful prognostically.
BK
What do you know about the efficacy of stem cell treatments for lupus?
Dr. Grossman
Stem cell treatment has been used in patients with severe refractory disease with varying success. I think of it as a potential aggressive treatment with significant associated risks but not a cure.
Toosie
Is pulmonary hypertension common with systemic lupus?
Dr. Grossman
That is an interesting question. It is not clear how common it is and it depends on how one defines the condition. Typically only patients that have symptoms such as shortness of breath are checked for it. We hope soon to have research funds to look at this question and give you a better answer.
Moderator
That is all the time we have for today’s chat. Thank you to Dr. Jennifer Grossman for joining us.
Please join us at a special day, Thursday, July 17 at 3 p.m. Eastern, for our guest Dr. Victoria Werth, who will host a chat on "UV Light & Lupus."
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