martes, 18 de septiembre de 2007

1ª Parte de mi diario con el tratamiento biológico TNF Remicade

Diario de mi tratamiento con el tratamiento biológico TNF Remicade


1ª parte de mi diario



28 de octubre del año 2005. Empiezo mi tratamiento con el Remicade con la cantidad de 3 miligramos por kilo de peso como peso 64 kilos me tocan 192 miligramos de Remicade pero al ser los viales de 100 miligramos cada uno me los ponen completos con lo que cada infusión es de 200 miligramos disueltos en medio litro de suero.

La duración de la infusión es de unas dos horas en gota a gota mecanizada. Y las tres primeras sesiones en un espacio de un mes día más o menos, y luego de estas tres primeras infusiones me pondré el tratamiento cada ocho semanas o sea cada dos meses más o menos.

voy a recordar muy breve mente mi situación con la EA en el momento que empecé Con el Remicade: Des pues de unos 29 años con la EA y sin hacerme el efecto deseado Ninguno de los medicamentos tomados hasta el momento llego a estar en una situación Bastante lamentable tanto a nivel de dolor como de anquilosamiento no me podía poner unos calcetines y no podía levantar los pies del suelo más de un dedo del suelo para mi hacer algunas cosas cotidianas de la vida me era imposible, mi estado era el de un anciano de 90 años de estos que debido a sus estado están tapaditos con una manta y andando poquito a poquito debido a su estado.

Día de la primera infusión me senté en el sillón de la sala después de ponerme la vía en las venas del brazo izquierdo, en estos momentos me encontraba dolorido por todas las partes de mi cuerpo y muy anquilosado. Y algo acojonado por el tratamiento que me iba a someter después de leer los posibles efectos secundarios de los que me había informado con anterioridad.

Cuando termino la infusión y me levanté del sillón empecé a notar una sensación que hacia muchos que no sentía era como la de recuperar la libertad de mi cuerpo mucho mas ligero y con menos dolor, sensación que fue aumentando a medida que pasaban los días, como síntomas o efectos secundarios solo en la primera semana tuve dolor de cabeza pero nada que no se pudiera solucionar con producto a adecuado para el mismo En mi caso fue el Dolorac 600 mg (Lisiato de ibuprofeno) y de encontrarme algo chafado, síntomas parecidos como los de un principio de gripe.

Y a medida que los días pasaban me encontraba mejor los dolores eran muy pocos y ganaba cada día en movimiento lo que me daba mejor calidad de vida y mas libertad según para que cosas de la vida cotidiana al no tener que depender de mi mujer para ducharme y ponerme unos calcetines etc.

Día 5 de Noviembre del 2005 me toca mi segunda infusión del Remicade y después pasar visita con mi reumatólogo para ver los resultados de mi primera analítica desde que empecé el tratamiento, sorpresa de la buena parece ser que esto funciona el día que Empecé con el tratamiento tenia la Velocidad de sedimentación globular a 62 mm/h y la Proteína c reactiva a 48. Mis resultados con la primera infusión avían cambiado por completo y tenía la velocidad de sedimentación a 7 mm/h y mi proteína c reactiva a 8 mg/l.

Durante estos días cada vez me en contrata mejor con menos dolores y más ligero y el Anquilosamiento cada día era menos hasta tal punto que podía levantar mi pierna derecha que es la que mas tenia afectada por lo mal que tengo las pelvis y las caderas hasta el punto de poder poner el pie encima del granito de la repisa de la cocina cuando dos meses atrás no podía ni ponerme los calcetines. Día 18 de Marzo del 2006 Me toca mi tercera infusión con el Remicade y a partir de ahora las infusiones serán cada ocho semanas ósea cada dos meses más o menos.

Me extraen sangre para la analítica para la próxima visita al reumatólogo y me ponen la infusión y después pasó a ver a mi reumatólogo para el control con el tratamiento por la consulta para ver como me ha ido durante este mes aproximadamente.

Las cosas siguen funcionando y la calidad de vida cada día es mejor y los dolores ya son pocos y soportables, parece ser que me estoy divorciando de mi querida espondilitis después de casi 29 años de matrimonio llevándonos a muerte, pues yo en este caso me considero Hombre mal tratado por mi esposa de 29 años llamada espondilitis anquilipoyectica conocida por las signas de EA.

Día 21 de Enero del 2006 Me toca mi cuarta infusión del Remicade y han pasado casi dos meses desde la última. He pasado mis primeras navidades después de muchos años muy bien en calidad de vida y salud sin apenas dolores ni síntomas de la enfermedad y hasta el momento no he tenido ningún brote de la misma.

Mis analíticas siguen siendo muy buenas, y no he tenido hasta el momento ningún efecto secundario del tratamiento del Remicade.

Mi reumatólogo esta muy contento de los resultados obtenidos en estos últimos meses y me propone si quiero entrar en un estudio que se esta realizando en enfermos de espondilitis con el tratamiento del Remicade por que hasta la fecha se desconoce cuanto tiempo se puede o se debe estar con este tratamiento y que es lo que sucede cuando ha un enfermo de espondilitis que le funciona bien lo deja si aparecen los síntomas y los brotes de la enfermedad otra vez o por cuanto tiempo dura el efecto del milagro del Remicade como en mi caso.

Una de las consecuencias de este estudio es el posible riesgo de que durante el tiempo que este sin tomar el Remicade que mi cuerpo pueda crear anticuerpos contra el Remicade y si lo vuelvo a necesitar no me funcione o me de algunos efectos no deseados no muy agradables por supuesto pero esto pertenece a otro capitulo en el futuro. Decido tomar parte en el estudio voluntariamente y por riesgo propio para saber algo mas de los efectos de estos tratamientos en esta enfermedad.



Día 18 de Marzo del 2006
Me toca ponerme mi quinta infusión del Remicade y acudo a mi hospital como de costumbre para que me pongan mi dosis, la infusión trascurre bien como siempre y luego paso visita con mi reumatólogo para el control de los dos meses trascurridos de la infusión, las analíticas siguen bien y yo estoy mejorando mucho.

Solo me queda un dolor residual en las caderas y parte del pubis y el hueso del fémur Dolor que comento con mi reumatólogo y me explica que estos dolores son debidos al mal estado que tengo estas partes por la artritis que con los años me ha causado mi espondilitis y alas lesiones que se han ocasionado a consecuencia de la enfermedad u ha un fuerte accidente de circulación que padecí hace casi ocho años el cual me dejo casi impedido para poder andar durante casi un año y agravo mi espondilitis y hizo que esta se volviera mas rebelde a los tratamientos y a los resultados con la medicación, por mucho que he mejorado con el Remicade sigo necesitando un bastón para poder andar por la calle y no forzar mi cadera derecha aún que hay días que a penas lo necesito hay otros que si y me acostumbrado tanto después de casi ocho años que parece que me mare si salgo a la calle sin el y parezco un pato mareado si no lo llevo con migo.

Según mi reumatólogo e informaciones que yo he podido encontrar sobre los tratamientos con Biológicos como el Remicade no mejoran mucho la enfermedad en las zonas periféricas y este es mi caso.

El Remicade sigue funcionando y cada día mejor para todo el resto del cuerpo y me permite hacer cosas que hacia muchos años que no podía hacer, con esto siempre me refiero a cosas de la vida cotidiana del día a día como andar una hora sin tenerme que sentar por el dolor, poder colgar una cortinas en casa etc.

Ya que tengo concebida una incapacidad absoluta para todo tipo de trabajo desde que me ocurrió el accidente, y si me paso en hacer cosas que no tendría que hacer después hay partes de mi cuerpo que me pasan factura.


Día 6 de junio del 2006
Hoy me toca mi sexta infusión con el Remicade La infusión trascurre bien como siempre y hasta el momento sigo igual de bien y Sin ningún efecto secundario no deseado, después de paso el control con mi reumatólogo de cómo me he sentido en estos dos últimos meses y miramos las analíticas correspondientes a este control las cuales son más amplias que las anteriores.

Debido a que ya hace nueve meses que empecé el tratamiento con el Remicade entre una de las pruebas hay las de anticuerpos y de hormonas y una de inmunología llamada Srm-Ac. Contra Ndna. Todas las analíticas están bien y el reumatólogo me propone ponerme la última infusión dentro de dos meses para el estudio que comente anterior mente y yo le digo que estoy de acuerdo.

Comentare que he mejorado tanto que incluso he vuelto a poder montar en bicicleta después de muchos años sin poderlo hacer calculo que unos 16 para dar unos paseos a acompañando a mi nieta por los diferentes lugares naturales que tengo en mi entorno en el cual existe una ruta verde, esto si paseos tranquilos y descansando de en tanto en tanto que el horno no esta para bollos y nada mas me falta una mala caída. Para fastidiar la cosa mas de lo que esta.

Día 1 de Septiembre del 2006.
Hoy me toca mi sétima y ultima infusión con el Remicade han trascurrido once meses con el tratamiento y dos que hay que esperar de una a otra infusión y control a ara pasado un año y un mes desde mi primera infusión cuanto tenga que regresar al reumatólogo para las analíticas y ver como he pasado estos dos meses desde el día de hoy.

Como siempre después de la infusión paso el control con mi reumatólogo y quedamos para dentro de dos meses y me manda una Analítica completa para ver como estoy de anticuerpos, la cual la tendré para últimos de Octubre y ala visita a primeros de Noviembre.
Durante estos días de mi ultima infusión tengo que decir que me pasado un poco en cosas que no tenia que hacer pero como soy muy tozudo las he hecho siempre han sido cosas de no levantar pesos mi esfuerzos reparaciones menores de la casa pero de tener que estar agachado cosa que me mata las caderas y las rodillas pero como dicen que sarna con gusto no pica.

Mi estado hoy en día que escribo este diario de mi tratamiento con el Remicade es bueno dentro de lo que estaba antes de empezar el tratamiento y me en cuentro real mente muy bien de lo que es los tremendos dolores y anquilosamiento que tenía anterior mente antes del tratamiento con brotes de la EA a diario y en todas partes de mi cuerpo durante muchos años.

No estoy bien al cien por cien por el lamentable estado de las lesiones que me a dejado esta enfermedad y el accidente en mis míseros y carcomidos huesos pero como esto no lo quita ni el Remicade ni nada necesitaría cambiar de carcanada para no tener estos síntomas pero como no hay nadie que e la ofrezca me tendré que aguantar con la mía. Bueno un pequeño resumen de mi tratamiento y las incidencias que he tenido durante el tiempo que estado con el, y de que es lo que yo opino del resultado del estudio en el que estoy metido.

1ª Durante el tratamiento no he tenido ningún efecto secundario con el Remicade a pesar de los muchos que puede dar, solo un dolor de cabeza durante la primera semana y un poco de cansancio más de lo normal en una enfermedad como esta durante unos días sobretodo el primer día de cada infusión.

2ª Durante mi tratamiento he tenido tres infecciones por culpa de las muelas que este es un tema que ya me viene de lejos y por lo cual no le doy la culpa al Remicade a pesar que con estos tratamientos se corre el riesgo de coger serias infecciones las cuales pueden ser de alto riesgo, para la vida del participante, todas me las he curado en pocos días diría en los normales de cualquier otra persona que no este con estos tratamientos usando antibióticos adecuados para el caso y a acudiendo al saca muelas y vacía bolsillos el cual me a extirpado tres piezas de la boca y séme han curado bien sin problemas. Una infección de intestinos de verano de un virus de estos que siempre están buscando despistados para meterse dentro y fastidiarle a uno y hacerle gastar en papel de wc más de la cuenta, la verdad es que me dio fuerte en pocos minutos y me puse fatal y mi mujer estuvo a punto de llamar una ambulancia del mal color que me quede y parecía mas un muerto que un vivo séme dio la idea de tomarme una sopa de tomillo con pan cosa que desinfecta mucho para estas ocasiones y dos pastillas de un antibiótico que tenia en casa a las dos horas empecé a mejorar y al día siguiente estaba bien solo que con un poco de descomposición y mi medico me dijo que continuara con el antibiótico unos días mas por que seguro que era algún microbio de verano.

Me salio como un granito pequeño en medio del sacro el cual se hizo grande en pocas horas en seguida me puse una pomada que es para reventar estas cosas y a base de antibiótico y al día siguiente acudí a mi medico de cabecera y este sabiendo lo que yo estaba tomando me atendió inmediatamente mandándome una dosis de antibiótico para un caballo y halos cinco días empezó a reventar y parecía una fuente durante cuatro días acudí diariamente a mi medico el cual me lo curaba y controlaba hasta que se cero y quedo curado del todo. Estas son las incidencias que he tenido durante mi tratamiento.

Las cuales las puede tener cualquier persona que no este con estos tratamientos solo que en mi caso asido durante el tratamiento quizás por casualidad pero llevadas bien y a tiempo no han resultado peligrosas y se han curado en pocos días. 3ª Tengo que decir que la calidad de vida me a cambiado mucho con mi tratamiento y puedo hacer muchas cosas que jamás me hubiera pensado que podría hacerlas otra vez Pero eso si pequeñas cosas que en mi caso para mi son grandes logros como la libertad de mas movimiento y el no tener necesidad de la ayuda de nadie para las cosas mas esenciales de la vida cotidiana, muchas veces he leído que con estos tratamientos muchas personas pueden volver a rehacer su vida normal y volver a realizar un trabajo.

Tengo que decir que yo no podría por que aún que este bien en cierto modo me han quedado diversas secuelas las cuales no me permiten hacer muchas cosas y sobretodo llevar un ritmo de vida fuera del ámbito de la tranquilidad y el descanso cuando es necesario y el cuerpo lo requiere mis caderas no me permiten hacer muchas tonterías y me pasan factura rápida mente, aparte de que cuando hago un esfuerzo fuera de lo normal como un viaje de unas horas o el andar demasiado cosa que me encanta a parece una fatiga fastidiosa que en poco tiempo pasa a ser una especie de dolor en las zonas mas afectadas y según mi reumatólogo dice que en muchos casos de estas espondilitis con el tiempo se queda un dolor diferente que no es de huesos sino de que a uno le duelen todos los tendones y músculos y partes blandas del cuerpo parecido a una Fibromialgia que es muy usual en espondiliticos crónicos. Bueno para terminar este capitulo diré que Remicade pertenece a un grupo de agentes Biológicos llamados Tnf (factor de necrosis tumoral) que actúa sobre las células T Esta compuesto en un 75% de células humanas y en un 25% por células de ratón esta parte de células de ratón son precisamente uno de los riesgos de que el cuerpo cree anticuerpos contra el medicamento durante su toma y este riesgo aumenta a partir de las 14 semanas de no ponérselo pero no le ocurre a todos por igual.

La segunda entrega será a partir de entrar en los cuatro meses desde mi ultima infusión. Si me pidieran que adelántala un resultado de este estudio mí adelanto seria este algunos pasaremos cuatro meses y quizás mas sin necesidad de volver al tratamiento con el Remicade pero creo que yo personal mente mi EA volverá algún día para recordarme que estamos casados y a un cónyuge tan no se le abandona tan fácilmente menos cuando se le acaban el dinero del viaje que le pague al Caribe unos pocos quizás no necesiten durante mucho tiempo o nunca mas volver a estos tratamientos y puedan tener buena calidad de vida con un mantenimiento con medicina de la convencional para estas enfermedades.

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