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Masa Depan Penderita Lupus

Thursday, March 27, 2008

Kompas, 23 maret 2008 - by dr samsuridjal djauzi

Saya, perempuan (24), baru saja lulus sarjana ekonomi dan sedang mencari pekerjaan. Sewaktu menyelesaikan skripsi, saya mengalami demam lama.
Tadinya saya mengira demam tersebut diakibatkan terlalu keras belajar, tetapi setelah beristirahat, demam tetap timbul disertai pegal-pegal di otot. Saya memeriksakan diri ke dokter spesialis penyakit dalam dan dianjurkan menjalani sejumlah pemeriksaan yang biayanya cukup mahal.

Hasil tes menunjukkan saya terkena lupus. Saya amat terkejut dan khawatir karena menurut pemahaman saya lupus penyakit yang berbahaya dan tak dapat disembuhkan. Padahal saya baru saja menyelesaikan kuliah dan bersiap bekerja dan berkeluarga. Apakah semua harapan saya akan lenyap begitu saja?

Menurut dokter, lupus termasuk penyakit autoimun dan pengobatannya memerlukan waktu lama. Saya harus berkonsultasi dan diperiksa teratur. Sekarang saya menggunakan obat steroid. Karena obat generik, harganya tidaklah mahal. Apalagi sekarang saya cukup meminum obat tersebut dua tablet per hari.

Semula karena mengalami anemia saya mendapat obat 12 tablet. Kemudian setelah anemia membaik, penggunaan tablet steroid diturunkan secara bertahap. Saya juga mengalami kebocoran protein melalui ginjal. Untunglah sekarang kebocoran tersebut dapat diatasi dan urine saya sudah kembali normal.

Meski sudah dalam kondisi sehat, sekarang saya masih diliputi rasa khawatir. Apakah penyakit lupus dapat disembuhkan? Apa yang dimaksud dengan penyakit autoimun? Mungkinkah saya bekerja dan berkeluarga? Dapatkah penderita lupus berkeluarga? Apakah boleh punya anak dan jika punya anak apakah mereka nanti juga akan terkena lupus? Maaf pertanyaan saya agak banyak karena sedang memikirkan masa depan. Terima kasih atas perhatian Dokter.

M di S

Dewasa ini kasus lupus semakin meningkat. Mungkin ini disebabkan kesadaran masyarakat yang juga meningkat mengenai penyakit ini dan kemampuan dokter mendiagnosis penyakit lupus menjadi lebih baik.

Lupus pada umumnya menyerang perempuan muda. Meski jarang, lupus juga dapat menyerang laki-laki. Memang benar lupus digolongkan ke dalam penyakit autoimun, yaitu penyakit yang timbul akibat zat antibodi di tubuh yang sebenarnya fungsinya melindungi tubuh dari kuman atau sel kanker berubah fungsi menyerang organ tubuh penderita sendiri.

Pada lupus, organ tubuh yang dapat diserang antara lain kulit, sendi, jantung, paru, ginjal, otak, sistem pembuluh darah. Jika hanya terbatas pada kulit dan sendi biasanya penyakit lupus ini lebih ringan. Jika mengenai ginjal atau sistem pembuluh darah seperti yang Anda alami, maka penyakit lupus tersebut lebih berat dan disebut lupus sistemik.

Pada sistem pembuluh darah akan terjadi anemia hemolitik. Pada keadaan ini sel darah merah mudah pecah. Sedangkan pada ginjal terjadi pengeluaran berlebihan protein melalui ginjal dan dalam waktu lama (sekitar sepuluh tahun) ginjal akan terganggu fungsinya.

Keadaan yang sering kita hadapi di Indonesia penderita datang dalam keadaan organ tubuh sudah amat terganggu. Misalnya, anemia amat berat atau gagal ginjal.
Upaya untuk mengatasi keadaan organ tubuh yang mengalami kerusakan berat ini tidaklah mudah. Karena itulah pengobatan lupus di negara kita dianggap kurang berhasil. Sebenarnya terapi lupus di Indonesia dan negara maju hampir serupa, tetapi di negara maju penderita lupus berhasil didiagnosis jauh lebih dini sehingga hasil terapi juga lebih baik.

Jika di Indonesia kita mampu menemukan lupus pada keadaan dini, maka hasil terapi juga akan lebih baik. Untuk dapat mendiagnosis lupus secara dini, kesadaran masyarakat atas penyakit ini perlu ditingkatkan dan kepedulian dokter terhadap lupus juga harus lebih baik.
Umumnya penderita lupus datang ke dokter penyakit dalam dan dokter spesialis kulit karena gejalanya lebih sesuai untuk kedua spesialis tersebut, yaitu demam lama, pegal pada sendi, seriawan mulut, anemia, protein urine, dan lesi kulit muka.

Penyakit lupus dapat dikendalikan dengan obat. Artinya kita dapat mengetahui seorang penderita lupus tidak mempunyai gejala dan dalam keadaan sehat dengan obat. Umumnya obat yang digunakan adalah obat jenis steroid, tetapi sekarang tersedia beberapa obat lain untuk mendukung pengobatan lupus.

Keadaan tanpa gejala ini disebut remisi dan keadaan remisi ini dapat berlangsung lama. Risiko kekambuhan (relaps) memang ada, tetapi jika dikenali secara dini relaps akan dapat diatasi.
Dengan demikian, penderita lupus diharapkan dapat hidup normal. Dia dapat bekerja produktif di masyarakat, menikah, dan mempunyai anak. Umumnya anak dari penderita lupus sehat dan lupus bukan penyakit yang berisiko ditularkan kepada anak.

Meski demikian, tidak berarti lupus tak pernah dijumpai pada anak. Meski jarang, lupus juga dapat dijumpai pada anak.
Saya merasa ikut gembira karena kerja sama Anda dan dokter berhasil mencapai keadaan lupus remisi. Pertahankanlah keadaan tersebut dengan berobat teratur. Salah satu faktor penting kegagalan terapi lupus adalah penderita menghentikan pengobatan. Mudah-mudahan Anda akan berhasil terus dalam keadaan remisi dan dapat mewujudkan semua cita-cita Anda selama ini.

source

Labels: living, SLE

Blogged on 4:35 AM

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Cardiovascular disease activity in lupus -- even during remission?

Wednesday, March 26, 2008

What is the topic?

Lupus is a disease that has periods of obvious activity and apparent remission. However, even during what seems like quiet periods when there are no clearcut symptoms, it is possible that changes are occurring below the surface that can cause complications later.

What did the researchers hope to learn?

Lupus patients are at increased risk for cardiovascular disease (CVD), which involves hardening of the arteries and can lead to heart attacks or strokes later in life. The bone marrow makes special cells that help repair damaged blood vessels (endothelial progenitor cells, EPCs); people with CVD may have fewer of these repair cells in their blood stream, and this may contribute to the damage of the blood vessel walls, increasing the risk for cardiovascular disease. This group of researchers wanted to learn if lupus patients had lower levels of these helper cells, even when they were in remission.

Who was studied?

Fifteen women with lupus and 15 healthy women of the same age and similar smoking histories were recruited for this study. The lupus patients all were in remission for at least one year, and used low doses of prednisone or hydroxychloroquine alone or in combination with other lupus medications.

How was the study conducted?

The researchers took blood samples from all of the study participants and measured the EPCs and other cells that help produce them, called hematopoetic stem cells (HSCs). They compared the levels of EPCs and HSCs in the lupus patients and the healthy controls, and they also looked for relationships between the levels of these repair cells and other factors. To see whether the patients were developing CVD, the researchers measured the "stiffness" of the patients’ arteries with tests for blood pressure and blood flow.

What did the researchers find?

The levels of the EPC and HSC repair cells were lower in the lupus patients than in the controls. There was no correlation between the levels of these cells and measures of active lupus such as anti-dsDNA antibodies or antiphospholipid antibodies. Prednisone use did not appear to affect the number of the EPCs or HSCs, but hydroxychloroquine use did -- higher doses of this medication were associated with increased numbers of EPCs. Also, lupus patients who used hydroxychloroquine tended to have lower stiffness scores for their arteries than other lupus patients, which the researchers took as a sign that their blood vessels were staying healthier than others. All of these findings led the researchers to conclude that for some lupus patients, the ability to repair damaged blood vessels may be impaired, even if the patients are in remission and on medication, and it might be that continuing to take hydroxychloroquine even when otherwise well could help to protect the arteries from future risk.

What were the limitations of the study?

The size of the study population was very small, which makes it difficult for these preliminary findings to be thought of as proven. The researchers didn’t examine past use of medications, which may have had an impact on the lupus patients’ status when the study was conducted. Also, the lupus patients as a group had more traditional CVD risk factors than the controls, such as higher cholesterol, and it is possible that these other risk factors could have been affecting the levels of EPCs rather than lupus -- as could other things going on in the blood vessels and elsewhere they didn’t account for.

What do the results mean for you?

This study suggests the possibility that lupus might be contributing to future blood vessel damage even when there is no visible sign of the disease. At the same time, it suggests that finding a way to boost levels of EPCs and the HSCs might help prevent CVD from occurring in some lupus patients. It also offered further evidence suggesting that hydroxychloroquine might be useful in preventing CVD in lupus patients. It would be helpful to have a "before and after" study to see whether hydroxychloroquine raises EPCs in patients after it is given, compared to what is found in the same patients before it is given.

source

Labels: blood vessle damage, cardiovascular disease, CVD, endothelial progenitor cells, Haematopoietic, SLE

Blogged on 5:54 AM

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Risk Factors for Pneumonia

What is the topic?

Pneumonia is the most common form of lung disease in lupus patients. The first defense against pneumonia is a person’s immune system, which is called to action and directed by a number of genes.

What did the researchers hope to learn?

The researchers for this study wanted to see if they could identify specific risk factors for pneumonia among lupus patients. Were older patients at greater risk? African Americans more than Caucasians? Did it matter how long a person had lupus, or what medications they had taken? Along with these variables, the researchers were particularly interested in examining how very small differences in the structure of several genes involved in the body’s immune system might increase a lupus patient’s chances of getting pneumonia.

Who was studied?

The researchers analyzed clinical and genetic information on 282 patients (251 women, 31 men) who were part of the Lupus Genetics Project of the University of California, San Francisco. Nearly half (45 percent) were Caucasian, and other ethnic groups represented were Hispanic (18.4 percent), African American (11.7 percent), Asian/Pacific Islander (19.5 percent), and Other/mixed ethnicity (5.3 percent). Of the 282 patients studied, 42 were identified as having had pneumonia sometime after they were diagnosed with lupus.

How was the study conducted?

The researchers compared the patients in the study who had pneumonia with those who did not; the factors they compared were sex, ethnicity, socioeconomic status, age at lupus diagnosis, duration of disease, lupus medications, renal disease, and low white blood cell count (leucopenia). They also looked at small inherited differences in three genes that have previously been associated with high rates of infection. The researchers used complex statistical techniques to weigh the impact of the different factors on the rate of pneumonia.

What did the researchers find?

Being male, having had lupus nephritis or leucopenia, and treatment with immunosuppressive drugs were all associated with a higher risk for getting pneumonia, but the strongest association was a specific variation in a gene that plays a role in the production of a molecule called tumor necrosis factor (TNF). TNF helps cells recognize and defend themselves against foreign bacteria, including the bacteria that cause pneumonia, so any change in the genes that promote TNF may affect the body’s ability to fight off the infection. The researchers did not find evidence linking variations in the other two genes they studied with higher risk for pneumonia.

What were the limitations of the study?

This study relied on data that had already been provided to the Lupus Genetics Project, so the researchers were limited in the categories of information they could examine. They weren’t able to consider such potentially important factors as patient’s immunization histories, the doses of their steroid or immunosuppressant medicines, which increase the risk for infections. Also, they may not have identified all of the patients who had pneumonia owing to incomplete records. The relatively small size of the study population also meant that they may not have had as much genetic variation as they might have needed for important distinctions to show up.

What do the results mean for you?

This research does identify some important risk factors that need to be studied more thoroughly. If, as their findings suggest, specific variations in the TNF gene they studied -- or perhaps another gene yet to be identified -- can be shown to raise a lupus patient’s chances of getting pneumonia, doctors could use this information and recommend a number of measures -- such as pneumonia vaccines or antibiotics -- to help prevent some of these infections in those patients at risk.

source

Labels: genetic, male, pneumonia, SLE

Blogged on 5:47 AM

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As Teenage Girls with Lupus Mature

What is the topic?

Women with lupus may have problems with their menstrual cycle, such as increased blood flow, irregular periods, missed periods and even premature ovarian failure (POF) which means that women go into menopause earlier than normal. Early menopause is often the result of treatments for lupus, in particular the immunosuppressant cyclophosphamide (CYC).

What did the researchers hope to learn?

Almost all of the studies about menstrual problems in lupus have been on adult women. This study wanted to see if adolescent females with juvenile lupus were also at risk for these kinds of problems, and if there were any differences in their symptoms from those of older women with lupus.

Who was studied?

Three-hundred fifteen adolescent girls with lupus from 12 different medical centers in Brazil were studied for this research. All were over 10 years old and had reached puberty, having had at least one menstrual period. Thirty-five of these patients had episodes of missed periods.

How was the study conducted?

The researchers reviewed patients’ records and medical histories for all of the patients in the study: how old patients were when they were diagnosed with lupus, how long they had been diagnosed, how old they were when they had their first period, their lupus symptoms, and the medications they had taken. If the patients had missed periods, the researchers noted when it developed and how long it lasted. They compared the information for those patients who had missed periods with those who didn’t, to see if there were any differences. They also took blood samples from each of the patients to study the levels of different hormones.

What did the researchers find?

The researchers found several significant differences between the patients who had missed periods and those who did not. Patients who had missed periods tended to be younger (average age 15.04 years-old versus 17.8 ), had their lupus diagnosis for shorter periods of time (3.2 years versus 6.1), and were closer in age to their first period (3.4 years into puberty versus 6.7). They also had more serious lupus disease activity when they started missing their periods and were more likely to have kidney involvement.

Unlike the studies on adults, the researchers found no relationship between cyclophospamide therapy and missed periods in the juvenile patients. Also, none of the juvenile patients in this study had premature ovarian failure. This is not a surprising finding, since cyclophosphamide kills eggs, and younger women have many more eggs to spare than older women.

What were the limitations of the study?

This study focused only on the patients’ adolescent years: there is no way to know if some of the patients who didn’t have menstrual problems during those years might not develop these symptoms later in life. Also, this study was done by looking at past records of patients, so the research could only be based on information that had already been obtained; there may have been other questions the researchers would have addressed if they were examining the patients at the time the symptoms occurred. The researchers did not divide the study patients by ethnicity: there may be important differences in how these menstrual problems occur depending on ethnic background. For all of these reasons, more studies will be needed to understand how lupus affects younger women.

What do the results mean for you?

Lupus patients in their teens—and their parents and health care team—should be aware that menstrual abnormalities can occur. However, this research confirms some earlier studies which suggest that cyclophosphamide is less likely to put younger patients into menopause than older women. Even when adolescent lupus patients had missed periods, their ovaries continued to function later on; that might relieve a younger patient of some worry about their chances to become pregnant later in life.

source

Labels: Brazil, girl, JSLE, juvenile, SLE, teenage

Blogged on 5:41 AM

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Early signs of lupus, even before a diagnosis can be made?

Friday, October 26, 2007

Clinical criteria for systemic lupus erythematosus precede diagnosis and associated autoantibodies are present before clinical symptoms


What is the topic?

Diagnosing lupus is can sometimes be difficult. Because lupus symptoms may come and go and resemble other illnesses, it may take months or even years before a doctor can sort out what is going on. During this run-up period, most doctors agree, lupus disease activity is probably taking place, and lupus-related antibodies may be present even before symptoms occur.

What did the researchers hope to learn?
The researchers wanted to find out which symptoms tended to appear early on in most lupus patients and what antibodies might be present before certain clinical symptoms appear. They hoped this kind of analysis might provide clues about lupus disease activity and what course the disease might take even before symptoms are apparent.

Who was studied?
The researchers selected 130 patients who were diagnosed with lupus while they were in the United States military. Whenever someone joins the military, he or she has a baseline medical examination that includes an in-depth physical examination, medical history, and blood tests. The researchers would be able to use that information to look for signs of lupus and run tests for antibodies that were present before the diagnosis was made.

How was the study conducted?
Medical records for each of the 130 patients in the study were reviewed, and the researchers collected information about various features of lupus if and when they occurred, and if they appeared before the lupus diagnosis was made, how many months/years before. They also ran antibody tests on the blood samples to see what antibodies might have been present before clinical symptoms appeared. The researchers compared all of this information for patients based on their ethnic background, age when they were diagnosed with lupus, and the time frame separating symptoms’ appearance and diagnosis.

What did the researchers find?
Of the 130 patients studied, 104 had at least one clinical feature present before the diagnosis was made. Most of these patients (74) had only a single feature. The initial feature varied widely from patient to patient, but the most common early symptom was arthritis. In terms of time, discoid rash and seizures tended to be the earliest findings, occurring nearly two years before the diagnosis was made; interestingly, central nervous system involvement, which was one of the earliest problems to appear in patients in the study, did not commonly appear after the diagnosis.

There were also interesting differences across populations. Men were more likely than women to have kidney disease as a first symptom, and Caucasians more likely than African Americans to have early rash on the cheeks and rashes that were made worse in the sun.
Of the 104 patients who had clinical symptoms before their diagnosis, antibodies were often detectable before these symptoms. Antinuclear antibodies (ANA) showed up in 81 before the initial symptom. Seventeen patients had rheumatoid factor present when their blood was tested; arthritis developed later in 16 of them. As for anti-dsDNA and anti-C1q antibodies, which have been associated with kidney disease in lupus, 80 patients were positive for anti-dsDNA, and 38 of these patients had kidney disease; in 92 percent of these cases, the anti-dsDNA antibodies were detected prior to or at the same time as the diagnosis of kidney disease. About half of the patients who had anti-C1q antibodies developed kidney disease, but half did not; however, among the 18 anti-C1q patients who did have kidney disease, in 13 cases the antibodies showed up before the kidney disease was diagnosed, on average nearly one and a half years beforehand.

What were the limitations of the study?
The study was limited by the fact that the researchers had to rely on previously collected data, which had been provided for other purposes rather than specifically to look at lupus symptoms and lupus disease. Therefore, some lupus symptoms (like mouth sores) might not have been recorded because they weren’t really being looked for and they weren’t considered important in the overall health record of the patient at the time. Since the doctors following these patients before they were known to have lupus would not usually have been rheumatologists, there might have been many features of lupus that were simply missed. Also, though the researchers had at least one pre-diagnosis blood sample for each patient in the study, for some that was all they had, and the time intervals between that blood test and the lupus diagnosis varied greatly. For some patients there may have been changes in the antibody profile during that interval that the researchers wouldn’t have known about.

What do the results mean for you?
This study reinforces the notion that a lot of lupus disease activity may be taking place without patients’ or their doctors’ knowing it, in many cases long before the patient is diagnosed with lupus. However, the presence of certain antibodies may be a sign that later clinical symptoms are likely to appear, and so finding these antibodies early on when a patient has only one or a couple of symptoms may help doctors decide how they manage different patients, both before and after they have enough clinical criteria to determine a patient has lupus. On the other hand, it is also known that many family members of patients with lupus have lupus-related antibodies for many years without ever developing lupus. Some people can have these antibodies detectable temporarily during a viral illness or for unknown reasons, and then they go away. And as people age, they sometimes develop lupus-like antibodies as well, without becoming ill. The development of certain autoantibodies is probably one of several events that have to occur before a person develops lupus.

Labels: SLE, symptom

Blogged on 3:08 AM

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