Chat Transcript - Dr. Robert Lahita, Janaury 10, 2007
Lupus and Men
Moderator:
Good afternoon and welcome to the fourth in our series of live chats on topics related to lupus. This afternoon we have as our expert Dr. Robert Lahita. Dr. Lahita M.D., Ph. D. is a Professor of Medicine at Mount Sinai Medical School and Chairman of Medicine at the Jersey City Medical Center in Jersey City, N. J. He is currently a senior attending physician at the Jersey City Medical Center and a Senior Attending Physician at Saint Vincent’s Medical Center. Dr. Lahita has served on numerous committees with several organizations, including on the Lupus Foundation of America's Medical Scientific Advisory Council. Welcome Dr. Lahita.
Moderator:
Our first question is from Montell, Wisconsin. My husband has systemic lupus. I would like to know if there is some medication out there that he can take for the pain that he lives in every day. He has taken prednisone, plaquenil, methatrate and none of these has helped him. He has lupus now for 10 years now. He has since doctors on doctors for this. I just want to find something that is going to help him.
Dr. Lahita:
One of the first things to consider is Fibromyalgia like pains that often coexist with lupus patients. Generally, most anti-inflammatory agents or pain medications take away the joint pains. This is not the case with Fibromyalgia which is often mistaken for lupus pain. Many doctors mistakenly keep raising the prednisone dose for such patients thinking that the pain is from lupus.
Moderator:
Our next question is from Brandy in Houston, Texas. My father has discoid lupus...does that play a factor in me getting SLE? I am a female 33 y/o and Hispanic, and was diagnosed with discoid at 16 then at 26 or 27 was hit with SLE.
Dr. Lahita:
About 30 percent of patients with discoid lupus can get systemic lupus at some time in their lives. This is apparently what happened here.
Moderator:
The next question comes from Lauren in New Jersey. Does Lupus affect a man's CPK level? Normal levels I understand are fewer than 200 my husbands have been as high as 1299 and his doctors cannot figure out why.
Dr. Lahita:
Lupus can affect anyone's CPK. In fact, a little myositis or muscle inflammation is common in the acute stages of the disease or during a flare. A count of 1299 is not 30-40,000 that one sees in inflammatory muscle disease and is typical of lupus.
Moderator:
Our next question is from Faye in Pearl, Mississippi. Is lupus hereditary?
Dr. Lahita:
No lupus is not hereditary in a classical sense. In mice it is hereditary. In people there is much research on this topic. There are certain genes on chromosome 6 and chromosome 1 (recent) that are associated with SLE but not definitely a risk factor or cause.
Dr. Lahita: One added point: I have many twins who have identical numbers of genes of the same type. Both twins only get lupus about 30% of the time. This means that there are other factors.
Moderator:
The next question is from Jenna in Los Angeles California. I have just learned that my soon to be 30 year old nephew has been diagnosed with this disease at its beginning stages. How treatable is it at its onset and what is the prognosis at this stage?
Dr. Lahita:
This disease is best treated in the early stages with some aggressiveness. If the doctor waits until the disease has caused much damage, then the prognosis is usually worse. So--as with all of these illnesses--early treatment is the rule.
Moderator:
This question comes from CP in Detroit, Michigan. I am a 30 year old male diagnosed with SLE just last March, 2006. I am 6'2" and 290 lbs and am currently on 14 mg of Prednisone as well as 200mg of Plaquenil 3 times a day. I started at 15 mg of Prednisone when I was diagnosed but have not been able to wean very well. Once I get to 13.5 mg I start to feel the fatigue, muscle pains, and sometimes chest pain associated with lupus. Is my dosage of Prednisone too high to be considered maintenance? Are there any tips you can give to week the dosage even more?
Dr. Lahita:
Weaning the dose of prednisone is an art. You should be able to get off of prednisone entirely over a time. The taper may have to be quite slow. However, any dose 20 mg or less is OK for a time. I have many patients who also have problems weaning, but eventually they get off of the drug. It may take weekly doctor visits however and much reassurance.
Moderator:
The next question comes from New Jersey. There does not seem to be any doctors who know enough about Lupus in men, can you recommend resources?
Dr. Lahita:
This is easy. You call your local Chapter of the LFA and they should have a list of the doctors who they recommend. Most often patients who have had the disease for some time know who the local experts are!
Moderator:
The next question is from Harold in Boston. Are men tested for lupus the same way women are?
Dr. Lahita:
Men are tested exactly the same way as women. There is no fundamental difference in the diagnostic methods.
Moderator:
How can a woman help her husband cope with lupus being seen as a “woman’s disease?”
Dr. Lahita:
This gets under the skin of all men. Lupus occurs more often in women but it is not a women's illness. In fact my recent publisher insisted that I tailor my recent book towards women because they buy more books, not because they have an "edge". Men with lupus are virile, reproductive, normal men. Men often ask that question. there are a group of men who might have low levels of male hormone that can contribute to lupus and other autoimmune diseases, but they are a special group.
Moderator:
The next question comes from Elias in Miami, Florida. I was diagnosed with discoid lupus around 6 months ago due to a scalp in my head. I have no other symptoms. Due to my job I’m exposing to sun not continuously but for a couple of minutes like five times a day. Is there any particular sun blocker that you recommend?
Dr. Lahita:
You should get a hat that covers your head with a big brim. A baseball hat will do. You should also use sun block with a blocking factor which is the highest values. I believe that it is called PSF 15-25 and is easily purchase in most drug stores. Just remember to get the highest sun blocking value in the cream.
Moderator:
The next question is from Pat in Friday Harbor, Washington. I am a 54 year old female with SLE. I developed sun sensitivity at about age 17. I have a son who is 29 year-old who has also developed sun sensitivity. Should he be having labs done to determine if he is developing/has SLE?
Dr. Lahita:
Not necessarily. Many people get sun burns and blister. This does not mean that they have lupus. Moreover, one does not wish to get people to constantly "look over their shoulder all of their lives" in the fear that they will have a disease. Most people who are ill should be tested. People should not be tested without symptoms--looking for trouble. I hope that this answers your question.
Moderator:
The next question is from Matt. I was diagnosed with Lupus 5 days ago. I have two questions: what questions do I ask my Rheumatologist on my first visit, and what type of diet do you recommend (as in what foods to avoid and what foods are o.k. to eat). I have been hearing a lot of negative stuff about alfalfa. What is in it that make's it cause flare ups, and what food contains it. And is bread ok, or will it cause flare ups?
First of all bread is fine. Next, you would have to eat a wheelbarrow full of sprouts to equal the amounts fed to monkeys that developed lupus. Anyhow is you already have lupus, it is like taking "coals to Newcastle". There is really no "good" diet for lupus patients. Some research on cruciferate veggies is now being researched. Fish oil may work for rheumatoid arthritis, but there is no evidence that it works in people. Regarding your doctor, ask him/er what the disease is about, how active you are, and what are they going to start to treat you with.
Dr. Lahita:
Fish oils --to date--only work for people with RA, not lupus. we have no data.
Moderator:
Our next question is from Dawn in Seattle. Since the majority of lupus patients are women and it's believed it has to do with hormones, can you explain why some men get lupus?
Dr. Lahita:
This is an area that I am working on day and night. I love the topic of immuno-endocrinology (sex hormones and immunity). There are ideas that hormones probably make the disease worse (i.e.: estrogens) but they do NOT cause the disease. Recently there is a lot of work on sex chromosomes but the data are preliminary. Men are a special group, because they have no hormonal risk factors except low male levels. In my testing of several hundred men, only a small fraction of those with SLE had low levels of male hormone. So the answer is not clear yet.
Moderator:
The next question is from Maryann in Bridgeport, CT. My husband has SLE, and we're concerned about having children. Is there any research on whether men with SLE will pass it on to their children? Is their genetic testing for this?
Dr. Lahita:
Lupus is not classically a genetic disorder. That means that you cannot pass it on like sickle cell disease or muscular dystrophy wherein "if you have the two genes" you get the disease. Much research is going forward on this. Lupus is not one of the diseases that one passes on to their children. Most autoimmune diseases just happen sporadically. For example a grandmother may have MS, a nephew may have RA and a cousin can have lupus. There are no hard genetic rules with lupus.
Moderator:
This next question comes to us from someone participating in today’s chat. I have SLE as part of mixed connective tissue disease. After an extreme case of polymyositis I have responded well to prednisone and imuran and had no flares for a year. What is the prognosis for SLE in my case?
Dr. Lahita:
If you have mixed connective tissue disease, you have a specific disease and lupus-like symptoms are merely a small part of the overall picture. most experts feel that MCTD (as we call it) is separate and related more to rheumatoid arthritis or scleroderma. It is strange and presents in different people in different ways.
Dr. Lahita:
The prognosis for your disease (which involves a small part of lupus) should be quite good.
Moderator:
This question is from Bill S., in Wheaton, IL. I developed a low platelet count (75-90) 15 years before the onset of SLE. Also developed hypertension at the same time when I was running 6 days a week and very fit. My health and vitality otherwise had been excellent. I am now 64. Were the low platelets and hypertension signaling lupus at that stage or had nothing to do with it?
Dr. Lahita:
The blood pressure probably had nothing to do with it. I presume you had no kidney disease, because that would have something to do with the high blood pressure. The low platelets did have something to do with it. Either your plats were clumped (common) or you actually had an antibody against them (common). If you have "sticky blood" or APLS, your pats would also drop. Low platelets are fairly common in some forms of the disease and early on are just called ITP. This often predates the actual illness.
Moderator:
Kathleen from Long Island, New York writes: my husband's brother was just diagnosed this week after a week long hospital stay. They suspected Lupus, but did a bone marrow biopsy to look for blood cancers as his wbc was at 1.4, sodium at 109 and cholesterol at 77. Biopsy was clear, cat scan and mri's were all negative and he was discharged today. He is on 50mg prednisone and will follow up with a rheumatologist on Monday. One physician said he may be beyond the help of plaquenil. If not plaquenil, what is another medication for Lupus control other than say cytoxan?
Dr. Lahita:
This is interesting as a case. I am intrigued by the low cholesterol and should have your husband checked for the phospholipid syndrome or sticky blood. Plaquenil is a good adjunctive drug despite the fact that he needs additional agents. Cytoxan is reserved for BAD disease. I would probably use something new like cellcept or even a drug called rituxan if the need arose. the rheumatologist will know what to use, and it will depend on the severity of the illness, the blood tests, and a whole host of other things.
Moderator:
Macontino from San Juan, Puerto Rico asks: my 13-year-old son was diagnosed with Class IV lupus nephritis March 2006. Since September he has been taking the immunosuppressant Cellcept. Recently he came down with his first cough and his rheumatologist diagnosed him with having a touch of pneumonia. A course of the antibiotic Zithromax and not taking Cellcept for 7 days cleared his lungs. This was his first real infection since being on the Cellcept. How much more likely to getting infections does Cellcept make a person?
Dr. Lahita:
Not as significantly as other agents. I really like Cellcept and you did the right thing. The doctor was superb in removing the Cellcept for a time and treating the infection. This was perfect. Your son can certainly go back on the drug without problems. With all of these agents, the first concern is infection--and patients need to know that at the first sign of fever or sore throat or cough or burning urine, etc. they MUST call their doctor.
Moderator:
The next question is from Anita in Connecticut. Regarding your work with sex hormones and immunity, what is your opinion of DHEA? I have seen some studies on prasterone and was wondering what your experience has been.
Dr. Lahita:
I like Prasterone or DHEA, however the drug has had good effects in only certain areas like cognition, weakness, and mild disease. We hoped that it would build bone in the presence of steroids like prednisone, but the data are "soft". My opinion is that the drug has a role in the illness, but only with mild to moderate disease. My patients swear by it. Let me say that I believe the immune system is "sexed" before birth and it might be quite difficult to change the functions of the immnuue system with plain sex steroids. We might have to use additional agents.
Moderator:
The next question is from Sandy in Hot Springs, Arkansas. Why do men develop drug induced lupus more than women?
Dr. Lahita:
Simply because more men have heart disease and more men use antiarrythmics that cause drug induced disease (that also goes for antihypertensives)
Dr. Lahita:
This could change with time however, because I am told that more women are getting heart disease these days and will shortly be equal in prevalence to men. Equality!!!!
Moderator:
Andrew in Warrenton, Virginia asks the following: I have heard the symptoms of lupus are more severe in men than in women. Is that true?
Dr. Lahita:
Well it depends on who you read! There are many studies that say that men have worse disease than women, but I do not believe that. Men simply have different presentation. The severity scales by most experts show that the disease is equal in severity I both men and women. I have a table that I always show from different studies to show this. I cannot give you that in a chat room, but at some point I can write a piece for the LFA showing that.
Moderator:
Will the medications I have to take for lupus effect my PSA tests?
Dr. Lahita:
Good question! I do not know who you are, but I have several men who have had PSA levels off the wall. They have had repeated biopsies (one guy at least 6 times) and they are always negative. This is something new and strange--but also important. I called the guy in Philadelphia that invented the test. He has no clue as to why this happens.
Moderator:
We have approximately ten minutes left in our chat time today. Our next question is from John in Colorado. I am 24 years old and go to the gym 3 to 4 times a week. Will lifting weights cause my lupus to get worse?
Dr. Lahita:
It depends. Someone back in the early questioning asked me about CPK levels in lupus. They can be elevated modestly (in the 1000-3000 range). When you lift weights, you also raise your CPK levels. A simple idea is that if you have muscle inflammation, you might release more muscle antigen (which the body sees as foreign) and make your symptoms worse. This is a theory, but I do not subscribe to it. I believe that the aerobic effects of exercise far outweigh the downside of releasing small amounts of antigen. After I go to the gym (every week with a trainer) I feel like I also have myositis. I am sure that my CPK goes up.
Moderator:
Brian in Baltimore, Maryland says: I understand that antibiotic therapy is effective for RA and some other autoimmune diseases. Is there any evidence that it is effective for lupus?
Dr. Lahita:
We have no data to support the use of antibiotics in lupus.
Moderator:
KS in New York asks: has rituxan been approved for Lupus use? I know it is approve for RA. I asked you about my brother in law but I also have SLE (12 years) with lupus nephritis and am on prednisone and cellcept, waiting for rituxan to be approved. Was considering a trial study, but not sure I want to do that. Although cytoxan is not a wonderful alternative either.
Dr. Lahita:
Well, even though rituxan is not approved for lupus, many investigators and many private physicians are using it "off label" for severe cases. It has marvelous effects on some patients who have not responded to many agents. I would seriously consider taking it if your doctor thinks that it will work for you. It has been quite safe in our hands. Very little side effects!
Moderator:
This will be our last question for this afternoon's chat. Trishelle in Ogden, Utah asks: Is there anything I can use to stop my face from breaking out when I shave?
Dr. Lahita:
You mean from lupus? Shaving is a problem for all men with sensitive skin. We all break out--especially after night of drinking when the pores are very OPEN. This has nothing to do with the disease unless your medicine lights are UV or fluorescent and you are very sensitive to light. An astringent like witch hazel usually does the trick.
Moderator:
We would like to thank Dr. Lahita for his time today and for providing such great answers to our questions. Please join us on January 31st at 3:00 EST when our guest will be Dr. Mark Gourley. Dr. Gourley is a rheumatologist with the Environmental Autoimmunity Group (EAG) at the National Institute of Environmental Health Sciences, in Bethesda, MD. The topic of the chat will environmental factors in lupus. This concludes today's chat.
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