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Various scientific societies have approached this challenge&#44; and there are very complete guidelines&#44; and there are studies that contemplate more specific issues of the disease&#46; In general&#44; the recommendations do not differ substantially from one set of guidelines to the next&#44; and it is difficult to establish a consensus on a number treatment issues due to the lack of sufficient&#44; well-designed studies and to the unique characteristics of the disease&#46;<a class="elsevierStyleCrossRefs" href="#bib0005"><span class="elsevierStyleSup">1&#8211;5</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Due to the difficulty in establishing defined regimens for SLE and the need for guidelines to be concrete&#44; essential aspects of human nature &#40;as well as other types of general recommendations&#41; are at times forgotten&#46; Personal experiences are also not recorded&#44; which&#44; although not verified by scientific studies&#44; often deal with more or less standard practice&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">The objective of this article is to comment on a series of practices in the treatment of patients with SLE&#44; practices that are not usually in the guidelines and that could be of interest&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0030">Hydroxychloroquine</span><p id="par0025" class="elsevierStylePara elsevierViewall">Antimalarial therapy with hydroxychloroquine&#44; empiric at first and with no small amount of skepticism by some professionals&#44; has now been accepted by almost the entire scientific community&#46; Thus&#44; hydroxychloroquine is recognized as highly necessary from the start of the disease due to its well-documented beneficial effects&#44; few adverse effects and reasonable price&#46; However&#44; the dosages employed vary significantly among practitioners who treat patients with lupus&#44; and the guidelines do not usually comment on this issue&#46; For years&#44; when our patients with SLE are well controlled for approximately 4&#8211;5 years&#44; both from the clinical and analytical standpoint&#44; and as long as they are only receiving hydroxychloroquine&#44; we tend to annually reduce the dosage by approximately 200<span class="elsevierStyleHsp" style=""></span>mg each week&#44; without going below 600<span class="elsevierStyleHsp" style=""></span>mg&#47;week&#46; This approach is due to the pharmacokinetic characteristics of antimalarial drugs&#44; and is practiced independently of following the standard starting regimen at the onset of the disease&#46; We maintain patients indefinitely in this manner&#44; except when there are changes in the progression of symptoms&#46; The patients and we feel more &#8220;comfortable&#8221; with these lower dosages and we have not observed any decline in their outcomes&#46; Also&#44; in those patients who have some difficulty with sleeping&#44; we tend to recommend taking the dose in the morning and at night in those who are susceptible to some type of dyspepsia&#46; For patients who have aquagenic pruritus&#44; we recommend separating taking the drug from showering and to shower with the coolest water possible&#46;<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">6</span></a></p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Nonsteroidal anti-inflammatory drugs</span><p id="par0030" class="elsevierStylePara elsevierViewall">In general&#44; we prescribe very few nonsteroidal anti-inflammatory drugs &#40;NSAIDs&#41;&#44; because their benefits are similar to those provided by hydroxychloroquine and due to the possible adverse gastrointestinal&#44; hepatic and renal effects&#46; We reserve NSAIDs for cases in which they are required to best control musculoskeletal pain and symptoms of serositis&#46;</p></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Glucocorticosteroids</span><p id="par0035" class="elsevierStylePara elsevierViewall">Our patients with SLE often do not tolerate treatment with alternating days of corticosteroids &#40;prednisone&#41;&#44; which would be ideal from the physiological standpoint for the pituitary&#8211;adrenal axis&#46; On rare occasions and for limited periods&#44; we recommend patients with SLE take the full dosage of prednisone divided into 2 doses&#44; &#190; before breakfast and &#188; before dinner&#46; Examples would include mothers who get up very early to care or feed their children or other individuals with very early work schedules and who notice the &#8220;lack&#8221; of corticosteroid at approximately 5 or 6 AM&#46; We always keep in mind the central idea of using the lowest dosage possible&#44; even 0<span class="elsevierStyleHsp" style=""></span>mg if the patient&#39;s condition and quality of life allow for it&#46; In this respect&#44; it is very important that patients cooperate&#44; once they have been well informed of the risks and benefits of this drug and the need to discontinue its use when appropriate&#46; Therefore&#44; we need to explain to patients in detail that the reduction or withdrawal often entails some mild&#44; transient symptoms that are not secondary to a reactivation of the disease but to the pharmacological&#44; hormonal and euphoric potential of prednisone&#46;<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a></p></span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Immunosuppressants and biological treatments</span><p id="par0040" class="elsevierStylePara elsevierViewall">The majority of guidelines are usually fairly clear in terms of the evidence<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a> and clinical experiments<a class="elsevierStyleCrossRef" href="#bib0045"><span class="elsevierStyleSup">9</span></a> with immunosuppressants and biological treatments in patients with SLE&#44; considering the dosage&#44; time needed for the drug to be effective&#44; the dose reduction method&#44; etc&#46; The guidelines are also fairly explicit about the need to try biological treatment alone in specific patients and if they are refractory to conventional therapy&#46; In this respect&#44; there are numerous groups that emphasize the essential need to exhaust&#44; at appropriate dosages and periods&#44; traditional treatments before starting this expensive therapy for which we still require more evidence&#46;</p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Associations of patients with lupus</span><p id="par0045" class="elsevierStylePara elsevierViewall">We believe that associations of patients of lupus&#44; which exist throughout Spain&#44; have been of considerable help&#44; both for patients and for developing autoimmune disease units&#46; We also believe that the guidelines should recommend their growth&#44; for the dissemination of information about the disease&#44; for the human and social assistance they provide to patients&#44; and also for the proximity and ability to achieve greater assistance by public and private administrations&#46;</p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Follow-up of patients with systemic lupus erythematosus in our unit</span><p id="par0050" class="elsevierStylePara elsevierViewall">The guidelines are usually sufficiently explanatory in terms of how the follow-up of patients with lupus should be performed&#44; in terms of time between reviews&#44; laboratory tests to request&#44; the relevant information from the medical history and the physical examination to collect&#44; treatment regimens&#44; etc&#46; However&#44; this all entails an undeniable need&#58; available time to devote to each patient&#46; One of the numerous negative consequences of this lack of time is the failure to make informed requests of the autoimmunity laboratories that clearly and succinctly reflect the patient&#39;s symptoms and&#47;or syndromes&#46; Proper information leads to better results by providing laboratory specialists with well-directed tasks&#46; A lack of time leads to human problems and the difficulties that we often have with our schedules&#46; After several weeks or months without seeing their &#8220;lupus specialist&#8221;&#44; patients should be received and greeted by name&#44; by a doctor who pays attention and listens to them instead of focusing on the computer&#46; To this end&#44; we should conduct the computer-related steps necessary to have our patient&#39;s information on screen before the patient enters the office&#46; We estimated that the time devoted to our patients should be approximately 20&#8211;30<span class="elsevierStyleHsp" style=""></span>min&#44; which at times is not possible&#46; However&#44; if this becomes routine&#44; we have to stop&#44; think&#44; discuss and decide among the members of the unit what reasonable measures can be taken&#46; There is almost always some type of solution&#46; For example&#44; increase the time between reviews&#44; which will be easier if patients have the telephone number of the unit or an email address to ask less important questions and even easier so if the patients have a good relationship with the primary care doctors&#46; There is also always the possibility that management teams can provide us with better hardware&#44; staff and additional time&#44; if we offer high quality service and we demonstrate this quality with our unit&#39;s management data&#46;</p><p id="par0055" class="elsevierStylePara elsevierViewall">Recently&#44; we have studied how the treatment of patients with lupus is conducted in our unit&#44; in terms of time management and with the main objective of understanding the patient&#39;s clinical status since the last review&#46; We analyzed 112 consecutive patients from May to October 2012 and focused on the symptoms that spontaneously manifested at the start and during the review&#44; as well as the treatment that we applied&#46; In our patients&#44; the demographic data&#44; affected organs&#44; comorbidity and treatment were&#44; in general&#44; those typically found in patients with SLE&#44; and we always try to be the most rigorous in the implementation of the guidelines&#46; The most relevant results of this study were that 71&#46;4&#37; of our patients had symptoms that were not explained by their lupus&#46; Thus&#44; joint pain &#40;35&#37; of patients&#41; was highly suggestive of arthrosic etiology &#40;by the clinical characteristics of pain&#44; the examination data and because the patients showed good control of their lupus&#41;&#46; Manifestations of anxiety and depression were present in 28&#37; of patients and 27&#46;6&#37; had varied symptoms related to diverse processes unrelated to the SLE&#46; Another 9&#37; manifested digestive and respiratory symptoms&#44; once again without relationship to lupus&#46; Only 8&#46;9&#37; of the 112 patients were referred to other specialists&#44; because we decided to treat the large majority according to our criteria&#46; We provide very specialized care for patients with lupus&#44; but we need to address and guide other types of symptoms not related to SLE&#44; which is facilitated by the overall vision of the internist and by good doctor-patient relationships&#44; often lasting many years&#46; Our patients feel comfortable in our offices and want us to solve their problems with lupus and with other issues&#44; thus avoiding referrals to specialists and tests and changes in treatment&#46; While we have the time&#44; we do not want to give up this activity&#44; which makes us feel like lupus specialists and family physicians&#46;</p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Epilogue</span><p id="par0060" class="elsevierStylePara elsevierViewall">Understanding the opinion and clinical practice of specialists dedicated to treating SLE could be of interest&#44; because experience-based evidence can help us program well-designed tasks that facilitate the advancement of knowledge of this disease&#46;</p></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Authors&#47;collaborators</span><p id="par0065" class="elsevierStylePara elsevierViewall">All the authors of this article &#40;Juan Jim&#233;nez Alonso&#44; Jos&#233; Antonio Vargas Milestones&#44; Nuria Navarrete Navarrete&#44; M&#243;nica Zamora Past&#44; Sergio Aguilar Huergo&#44; Laura J&#225;imez and Jos&#233; Sea Sabio&#41; have contributed to the conceptual process and design of the article&#44; the collection&#44; analysis and interpretation of the information&#44; as well as the drafting&#44; review and approval of the article&#46;</p></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Conflicts of interest</span><p id="par0070" class="elsevierStylePara elsevierViewall">The authors declare that they have no conflicts of interest&#46;</p></span></span>"
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          "titulo" => "Hydroxychloroquine"
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          "titulo" => "Nonsteroidal anti-inflammatory drugs"
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          "titulo" => "Glucocorticosteroids"
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        8 => array:2 [
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          "titulo" => "Immunosuppressants and biological treatments"
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          "titulo" => "Associations of patients with lupus"
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          "titulo" => "Follow-up of patients with systemic lupus erythematosus in our unit"
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          "titulo" => "Epilogue"
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        "titulo" => "Abstract"
        "resumen" => "<p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">A series of measures in the management of patients with systemic lupus erythematosus &#40;SLE&#41; which usually are not found in the lupus guidelines are discussed&#46; In the lupus patient who has been well-controlled in the long term&#44; the dose of hydroxychloroquine should be progressively reduced&#44; without decreasing more than approximately 600<span class="elsevierStyleHsp" style=""></span>mg per week&#46; We recommend taking this drug in the morning in patients with insomnia&#44; at night in those with dyspepsia and to separate the intake of the drug from the shower &#40;and the water should be as cool as possible&#41; in those patients with aquagenic pruritus&#46; We do not use prednisone on alternate days and exceptionally divide the dose into &#190; before breakfast and &#188; before dinner&#46; Twenty to 30<span class="elsevierStyleHsp" style=""></span>min should be used per patient in every scheduled visit to assure a good clinical and human practice&#46; We analyzed the follow-up of 112 consecutive patients from our systemic disease unit and found that 71&#46;4&#37; of them had symptoms that were unexplained by lupus and we only referred 8&#46;9&#37; of them to other specialists&#44; probably because of our general training as internal medicine doctors&#46; We suggest that knowing the views of SLE specialists might be of interest since&#44; well-designed studies that would allow to progress in the understanding of this disease could be performed based on their experience&#46;</p>"
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        "resumen" => "<p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Se comentan una serie de medidas para los pacientes con lupus eritematoso sist&#233;mico&#44; que no suelen estar en las gu&#237;as&#46; Al enfermo muy bien controlado durante a&#241;os tendemos a ir reduciendo progresivamente la dosis de hidroxicloroquina&#44; sin bajar de aproximadamente 600<span class="elsevierStyleHsp" style=""></span>mg&#47;semana&#46; Este f&#225;rmaco aconsejamos tomarlo por la ma&#241;ana en los pacientes con insomnio&#44; por la noche en los casos de dispepsia y en los que presentan prurito de tipo acuag&#233;nico que separen la toma de la ducha&#44; y que esta sea con agua lo menos caliente posible&#46; No usamos el tratamiento con prednisona a d&#237;as alternos&#44; y excepcionalmente dividimos la dosis en &#190; antes del desayuno y &#188; antes de la cena&#46; En consultas deber&#237;amos dedicar entre 20 y 30<span class="elsevierStyleHsp" style=""></span>min por paciente&#44; para hacer una buena pr&#225;ctica cl&#237;nica y humana&#46; En nuestra unidad hemos analizado el seguimiento de 112 enfermos consecutivos&#44; y el 71&#44;4&#37; ten&#237;an una sintomatolog&#237;a no explicable por el lupus&#44; y solamente al 8&#44;9&#37; los derivamos a otros especialistas&#44; probablemente&#44; por nuestra capacitaci&#243;n general como internistas&#46; Sugerimos que conocer la opini&#243;n de los especialistas dedicados a tratar a los enfermos con lupus puede ser de inter&#233;s&#44; pues a partir de sus experiencias&#44; se pueden programar trabajos bien dise&#241;ados&#44; que permitir&#237;an el avance en el conocimiento de esta enfermedad&#46;</p>"
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        "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as&#58; Jim&#233;nez-Alonso J&#44; Vargas-Hitos JA&#44; Navarrete-Navarrete N&#44; Zamora-Pasadas M&#44; Aguilar-Huergo S&#44; J&#225;imez L&#44; et al&#46; Seguimiento de los pacientes con lupus eritematoso sist&#233;mico&#58; lo que no est&#225; en las gu&#237;as&#46; Rev Clin Esp&#46; 2013&#59;213&#58;453&#8211;456&#46;</p>"
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        "texto" => "<p id="par0075" class="elsevierStylePara elsevierViewall">We would like to thank Ana Rosales&#44; assistant in the Unit of Systemic Autoimmune Diseases&#44; for her extraordinary personal and professional work&#46; We would also like to thank our colleagues at the Department of Internal Medicine for their support in the growth of the Unit of Systemic Autoimmune Diseases&#46; We would also like to thank our colleagues on the Board of Directors of the Systemic Autoimmune Diseases Group since 2006&#44; Dr&#46; Pallar&#233;s&#44; Dr&#46; Ramos-Casals&#44; Dr&#46; Egurbide&#44; Dr&#46; Fonollosa&#44; Dr&#46; P&#233;rez &#193;lvarez&#44; Dr&#46; Ruiz-Irastorza Selva and Dr&#46; Solans who suggested the paper&#44; with the title of this article&#44; for the <span class="elsevierStyleSmallCaps">V</span> annual Meeting of the Systemic Autoimmune Diseases Group in Vigo&#44; and as a small tribute to their development&#44; dissemination and study of autoimmune diseases&#46; We would also like to thank our patients with lupus&#44; for their teaching&#44; behavior and affection that they have for us&#46;</p>"
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Journal Information
Vol. 213. Issue 9.
Pages 453-456 (December 2013)
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Vol. 213. Issue 9.
Pages 453-456 (December 2013)
Special article
Follow-up of patients with systemic lupus erythematosus: What is not found in the guidelines
Seguimiento de los pacientes con lupus eritematoso sistémico: lo que no está en las guías
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J. Jiménez-Alonsoa,d,
Corresponding author
jjimenezalonso@gmail.com

Corresponding author.
, J.A. Vargas-Hitosa, N. Navarrete-Navarretea, M. Zamora-Pasadasa, S. Aguilar-Huergob, L. Jáimezc, J.M. Sabioa
a Unidad de Enfermedades Autoinmunes Sistémicas, Servicio de Medicina Interna, Hospital Universitario «Virgen de las Nieves», Granada, Spain
b Servicio de Medicina Interna, Complejo Asistencial de León, León, Spain
c Laboratorio de Autoinmunidad del Servicio de Análisis Clínicos e Inmunología, Hospital Universitario «Virgen de las Nieves», Granada, Spain
d Coordinador de la Línea Lupus del Grupo de Enfermedades Autoinmunes Sistémicas (GEAS) de la Sociedad Española de Medicina Interna (SEMI), Spain
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Abstract

A series of measures in the management of patients with systemic lupus erythematosus (SLE) which usually are not found in the lupus guidelines are discussed. In the lupus patient who has been well-controlled in the long term, the dose of hydroxychloroquine should be progressively reduced, without decreasing more than approximately 600mg per week. We recommend taking this drug in the morning in patients with insomnia, at night in those with dyspepsia and to separate the intake of the drug from the shower (and the water should be as cool as possible) in those patients with aquagenic pruritus. We do not use prednisone on alternate days and exceptionally divide the dose into ¾ before breakfast and ¼ before dinner. Twenty to 30min should be used per patient in every scheduled visit to assure a good clinical and human practice. We analyzed the follow-up of 112 consecutive patients from our systemic disease unit and found that 71.4% of them had symptoms that were unexplained by lupus and we only referred 8.9% of them to other specialists, probably because of our general training as internal medicine doctors. We suggest that knowing the views of SLE specialists might be of interest since, well-designed studies that would allow to progress in the understanding of this disease could be performed based on their experience.

Keywords:
Systemic lupus erythematosus
Clinical guidelines
Internal medicine
Autoimmune diseases
Resumen

Se comentan una serie de medidas para los pacientes con lupus eritematoso sistémico, que no suelen estar en las guías. Al enfermo muy bien controlado durante años tendemos a ir reduciendo progresivamente la dosis de hidroxicloroquina, sin bajar de aproximadamente 600mg/semana. Este fármaco aconsejamos tomarlo por la mañana en los pacientes con insomnio, por la noche en los casos de dispepsia y en los que presentan prurito de tipo acuagénico que separen la toma de la ducha, y que esta sea con agua lo menos caliente posible. No usamos el tratamiento con prednisona a días alternos, y excepcionalmente dividimos la dosis en ¾ antes del desayuno y ¼ antes de la cena. En consultas deberíamos dedicar entre 20 y 30min por paciente, para hacer una buena práctica clínica y humana. En nuestra unidad hemos analizado el seguimiento de 112 enfermos consecutivos, y el 71,4% tenían una sintomatología no explicable por el lupus, y solamente al 8,9% los derivamos a otros especialistas, probablemente, por nuestra capacitación general como internistas. Sugerimos que conocer la opinión de los especialistas dedicados a tratar a los enfermos con lupus puede ser de interés, pues a partir de sus experiencias, se pueden programar trabajos bien diseñados, que permitirían el avance en el conocimiento de esta enfermedad.

Palabras clave:
Lupus eritematoso sistémico
Guías de práctica clínica
Medicina interna
Enfermedades autoinmunes

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