Lol. That's what I think based on everything I have read everywhere. It takes a bunch longer than 9 months. However, if he diagnoses them incorrectly maybe it is nine month average because they never had PMR to begin with. I do know two older women who each were diagnosed with PMR in two different states here in US and both have gotten off within a year. So I went by that holding out hope until I started to search the net. Now I think under a year is the exception and that most of us have this for many years if not forever. I wonder if there is a variable on the strength. It certainly seems like patients in the EU are on higher doses than here but I don't have a representative sample so it just may be the people who have turned to this site. I, too, think limiting the carbs and certainly the refined sugars will help squelch a bit of the inflammation but I don't think it, in and of itself, will put PMR into remission.
Yep. I sure like it.
I would have to argue with you. I don't think a diet would have any influence on the length of time the disease lasts. We all take prednisone but it does nothing more then treat the symptoms. It also will not shorten the duration of the disease.
There is evidence that neutrophils are implicated in some way in GCA at least - a study showed their prescence in GCA and other large vessels vasculitides even after 6 months of high dose (above 20mg) pred. It is known that neutrophils are involved in some way in how pred exerts its antiinflammatory effect but I don't think they know how. It occurred to me a few years ago when this stuff was published that there must be a link somewhere.
I didn't think that was what Nefret said - she suggested the low carb to help avoid weight gain/lose weight, which it indubitably does for a lot of people. The Medditerranean diet includes a lot of antiinflammatory foods - a low carb Mediterranean diet has been shown to help a lot of a/i conditions. No, it doesn't cure them but every little helps.
There is some thought that there are at least 3 different versions of PMR - a short-lived sort (25%), a medium term 4-6 years version(50%) and a life-long or at least very refractory version. That certainly matches with what I see on the three forums - and there is no way of knowing which you are going to be at the outset.
And no - I know a lot of US members who are on similar doses. People who are early in the journey are on higher doses usually and there are fewer who have had it a long time I think - lots of people disappear once they have the hang of reducing and know their own bodies.
Dan, I'll be very interested to hear how your Advil experiment goes in the future. After a 10 months of PMR I'm only down to 15 mg of pred (hopefully dropping to 12.5 next week) but I've gotten nailed hard by pain a few times recently after a day of heavy physical labor at my job. Always shows up about 2:00 am and lasts until my next pred dose. If combining pred with advil helps prevent I'd sure try it.
PMR seems to be hard to predict how it reacts to different circumstances. I just got over a cold that hung on for 3 weeks. 11 of those 21 nights were hellish for pain. Now the cold is gone and yesterday I worked outside on my yard raking, shoveling, on the rider mower for 4 hours and other work. I figured I'd flare up last night for sure. Instead all was well for the first time in many nights! Go figure. With all these recent episodes my hands and toes have gotten swollen and painful. I hope that isn't permanent. The hands have been tender all thru my pmr "life" but the swollen toes are a new issue that really concerns me. I see my rheumy specialist in 5 days - that'll be my 1st question for him.
Thanks. Good information.
it's too bad that once people get the hang of reducing that more don't hang around to do what they can to help others. Thank goodness you are still here. This is such a tough journey to do without support. I can't find a support group where I live. Bummer. Oh well, this is more immediately accessible anyway and on bad days can do it from bed. Is anyone doing research on the causes?
Are they confident this is PMR? And not an inflammatory arthritis?
Not specifically for PMR but for autoimmune disease in general there are plenty working in the field. I think there are people looking closely at causes of CA - and they are pretty closely related it is thought.
Primero, déjame decirte lo feliz que estoy de leer todos los textos sobre PMR. Es bueno saber que no soy la única que lucha con este problema de salud. Mi problema comenzó de la nada hace tres meses. Después de ver a mi médico de familia, ella me recetó inmediatamente 20 mg de Pred y me envió a hacer análisis de sangre, preocupantemente podría tener arteritis. Me convenció de que necesitaba el Pred, ya que podría quedarme ciega si eso era lo que tenía. Tres días después, supe que no tenía esa cosa terrible y que debía dejar de tomar el Pred. Como esta pastilla había eliminado por completo todos mis brazos y piernas muy doloridos, no quería dejar de tomarla. Una semana después (primera consulta), le pregunté al médico qué tenía. Ella pensó que era PMR, pero me recomendó que viera a un reumatólogo que podría hacer muchas más pruebas de sangre y sería capaz de guiarme. Sí, la PMR fue el diagnóstico. Mi reumatólogo cree que siempre estaré en Prednisona, y dijo que podría empezar a reducirla 1 mg al mes hasta que sintiera un brote y luego quedarme con un poco más de eso. ¡Fui capaz de reducir más rápido basándome en muchos informes de otras personas en la web! Durante las últimas cuatro semanas he estado tomando 5 mg, manejando bien pero fluctuando un poco con piernas, brazos y nalgas ligeramente doloridos. Esto se volvió muy doloroso y ayer tomé 7 mg, aunque con cierta renuencia, pero ha aliviado los dolores, así que parece que me quedaré en esto por un tiempo. Mi problema con estar en Pred es que adelgazará mis huesos y bajará mi sistema inmunológico. Sí, estoy tomando Calcio con Vitamina D, junto con otras vitaminas que se supone que mejoran tu sistema inmunológico. Lo siento por este largo relato, pero Jeannie solo quería decir que en mi caso creo que estaré en Pred por el resto de mi vida. ¡Gracias por animarme a escribir mi historia, he disfrutado mucho leyendo todos los informes aquí y leo con ansias cualquier nueva información sobre esta miserable enfermedad.
" My problem about being on Pred is that it will thin my bones and lower my immune system"
I have been on pred for 8 years, a lot of the time at above 10mg. I rarely have colds and have never had anything else infectious and my bone density has not changed significantly - I only take calcium and vit D supplements. Neither necessarily happen - lots of people on the 3 forums have had the same experience.
There is no virtue in taking too low a dose - you have to get the benefits of the pred to outweigh the downsides. If you are really well at 7mg stay there for now - it is a low dose, about the same amount as the natural corticosteroid your body makes and which is essential for life
To be at 7mg after just a few months is very good - and if your rheumy has a crystal ball he might make a fortune! There is no way he can say at this stage how long you will need pred - but other than that he sounds to be a good one and hang on to him: slow tapering and not tapering too far! They are rare birds!
Debo admitir que estaba en Florida cuando todo esto ocurrió. ¡Tuve la suerte de tener cobertura médica allí! Mi familia y los médicos reumatólogos eran todos mujeres. Curiosamente, los cuatro médicos del Centro de Artritis son mujeres. Sí, quedé muy satisfecho con su consulta, pero ella quería que pensara en algo de "infusión" para mis huesos, lo cual decliné con elegancia.
Por cierto, en mi caso, el Pred me adelgazó la sangre cuando estaba en 20 mg. Cuando fui a hacerme el análisis de sangre, sangré profusamente hasta el punto de que la enfermera pensó que estaba tomando Warfarina. También tuve un pequeño sangrado nasal y después de un pequeño corte de papel sangré durante mucho tiempo. Después de más investigación en la web descubrí que podía pasar. Ahora estoy de vuelta en el Reino Unido y veré a mi médico de cabecera a finales de este mes. He traído todos mis informes y espero poder conseguir una receta para Prednisona.
Gracias por tomarse el tiempo de responder a mi primera nota farragosa. ¡Buena suerte con tu problema! Me alegro mucho de tener este foro para compartir pensamientos, ya que puede ser bastante preocupante y estoy seguro de que a menos que hayas experimentado el dolor debe ser difícil de entender.
Freda,
Thanks for sharing. It's so wonderful to have a community to share with.
We're all in this together.
What do you know about the genetic link?
"I'm sure unless you have experienced the pain it must be difficult to understand"
That is the only slack I'm prepared to cut rheumatologists! But as doctors in the field they should have learned by now that is is often just RA without joint damage. And a far narrower spectrum of medication!
There isn't really one - there are no genes that are specifically linked to PMR/GCA. The genetic link is more that they believe people with a Scandinavian heritage are more likely to develop it.
He pensado mucho en esta pregunta. El problema es que lo obtuve por primera vez en mi año 78. Mi madre murió en su año 77. Tenía rodillas doloridas pero nunca recibió un tratamiento real para este problema... la literatura dice que es genético, pero no he podido encontrar un vínculo de esto en mi familia inmediata. Una prima de mi madre tuvo reumatismo severo y creo que estaba en una silla de ruedas. Su abuela y mi bisabuela vivieron hasta una edad muy avanzada, pero por supuesto
no sé cómo estaba ella. ¿Ha oído hablar alguna vez de una correlación con la eccema
y la PMR? Tuve un pequeño caso de esto en mis piernas el año pasado, que después de la Prednisona desapareció. Mi reumatólogo dijo, por supuesto, que siempre has sufrido esto desde la infancia, pero ciertamente no fue el caso, este fue mi primer caso de la cosa. De hecho, había visitado a un dermatólogo que me recetó hidroCortisona al 5 por ciento y cuando empecé a tener las piernas muy tensas por detrás, creí que estaba teniendo una reacción alérgica a la medicina. Lo dejé inmediatamente y esperé a que esta tensión se fuera, pero solo empeoró y comenzó en los brazos superiores, no podía cepillarme el pelo, etc. y el resto es historia. ¡Estaré feliz de leer cualquier conexión que puedas tener! Gracias
Jeannae, I'm inclined to think there is some sort of familial link but whether it's genetic or something connected with shared early life experiences or environmental exposures, I don't know. I have a family of cousins whom I lived with for several years when we were small children. I'm the oldest and have sarcoidosis and PMR, the cousin closest in age to me has rheumatoid arthritis, another cousin has osteoarthritis, the third one I was told first has fibromyalgia, but later someone said it's polymyalgia (she's never told me anything) and the youngest has schizophrenia, also considered part of the whole auto immune inflammatory spectrum. There is also an adopted son in that family, and as far as I know he has none of these or related disorders.
It has been found that schizophrenia isn't a typical autoimmune disorder:
Last year, "Is schizophrenia a disorder of the immune system?" in SCience Daily reported
"The international team led by Dr Jennie Pouget from the University of Toronto and Dr Jo Knight from Lancaster University have found strong evidence that schizophrenia is different.
They tested the idea that genetic variants influencing immune function contribute to the disease but they found that the pattern in schizophrenia is not the same as in classic autoimmune disorders.
Among 108 regions of the genome previously linked to the schizophrenia, they found only six which act on both the immune system and the brain.
Jennie Pouget said: "This doesn't mean that the immune system isn't involved at all but it could be involved in a completely different way."