Tengo PMR desde hace más de 3 años, comencé con 15 mg durante una semana, luego 10 mg, y luego intenté continuar reduciendo la dosis. No conocía el método de reducción DSNS durante el primer año. Desde entonces, he reducido la dosis hasta 7 mg (¡brevemente!).
El estrés y la sobreactividad han causado varios brotes.
Pregunta: ¿es normal estar tan avanzado en esto y seguir con 8 mg?
Me siento "mejor" que hace un año, pero la cantidad de prednisona no ha disminuido realmente.
It took me about 4 years to get to much under 10mg, I got stuck at 9mg. After a massive flare nearly 5 years ago I did get down to 5mg, 4mg briefly, but had another flare. Now I have just got back to 6mg.
I also have myofascial pain syndrome - and I'm fairly sure it is that that stops me getting below any given dose I get stuck at. Sort that out and I am able to reduce another mg or two.
It all depends on the current activity of the underlying autoimmune disorder - you need what you need to manage that. Force it, you have a flare and go higher to manage it which adds to the time it takes to get back where you were. Using the DSNS approach those flares are much less likely - but far more to the point, you don't go back to such a high dose time and again.
But a good half of patients need pred for up to 4 to 6 years. Being at 8mg after 3 years doesn't seem too bad. There are a lot of factors at play - maybe you are someone who is only absorbing 50% of the pred you take? You can't be compared with the patient who absorbs 90%. Both of you may NEED the effect of 4mg - you would have to take 8mg, they get away with taking about 5mg.
ESTUVE EN PRED 10MG. DURANTE 2 AÑOS. REDUJE A 8, LUEGO A 5, LUEGO A 1MG CADA MES HASTA QUE NO QUEDÓ NADA. AHORA ME SIENTO BIEN, UN AÑO DESPUÉS. PRED NO ES BUENO PARA TI A LARGO PLAZO. INTENTA DESHACERTE DE ELLO PARA SIEMPRE
It worked for you - but men often experience PMR and pred in a totally different way from women.
But what NEVER ceases to amaze me is how the proponents of "doing away with pred" assume those of us who take it are doing so for fun, for no good reason other than just taking it. It doesn't matter whether it is the medically qualiifed or the patient who is no longer on pred and somehow thinks they have done better.
Walk in MY shoes and then YOU may tell ME I shouldn't be taking pred. Or anyone else taking pred on the forum if it comes to that.
Hi Kathy,
I understand only too well where you are coming from. I got down to 7.5 was congratulating myself ,then whoops,a flare! I had been tapering had to go back to 10mg (that was when I was last good) I stabilised at that for a fortnight,then cut down to 9mg where I was good too. Now at 8mg and not so good,so am going to go back to 9mg for a bit. I saw my Rhuematologist last week. He is a young man and very good.
He told me when tapering to after a flare stay on the last dose I was good at for 6weeks,then drop by only a half mg for another 6weeks. He said the slow method is best for quality of life. He also said that too many patients try to reduce too quickly as they hate being on the drug .
So different from my first rheumatologist who anther me off pred altogether within 6months! Eileen's advice nod experience as usual is spot on and I really want to try the dsns method but haven't got there yet,
I understand that we are all different and what suits one will not suit another,so it's trial and error,but without the pred we would all be in a sorry state even though we don't like being on it
Barbara
Oh hallelujah!!!!! Where is this joy of a rheumy?
Airdrie, Scotland ,Eileen.
Barbara
Monklands then I assume? Do you belong to PMRGCA SCotland?
Walter: I have had PMR for only 2 months and my Rheumy has
me tapering to 10 next month. What was your taper like to
where you are now and did you use DSNS tapering?
Paul
What is DSNS method. I got PMR 2 weeks ago. Have had to go to 60 to get control. So how do I approach the future options intelligently?
if you really needed 60mg to get control of your symptoms then I would suggest it is possible you may not have PMR. PMR is characteristic in responding to moderate doses of pred, up to about 25mg. Giant cell arteritis may require more. But there are forms of inflammmatory arthritis that can present looking very like PMR but would not respond well to the lower doses.
If you follow this link:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find our "reading list" in the first post and the Dead Slow, Nearly Stop approach to reducing in the replies part, just scroll down to find it.
If it is actually GCA (giant cell arteritis) that you have then the initial reduction can be done in 5mg steps to get to a lower dose relatively quickly but as the dose reduces, the size of the reduction steps should also be smaller. A good guide is "not more than 10% of the current dose" but most people manage 5mg steps down to 30mg if they have no flares. Then the 10% guide is more important - 2.5mg at a time makes sense down to 20, or even 15mg.
Yes Monklands Hospital. I was originally sent to Hairmyers for diagnosis and that was where I saw the first Rheumatologist. He expected me to go from 30mg to nil in 6months. He then (thank goodness) referred me to Monklands for my 6monthly follow up .and I got the doctor I am now seeing.
yes I am a member of PMRGCA Scotland . I must say I find these forums extremely informative and helpful.
Barbara
Supongo que lo hago solo por diversión, entonces. ¿Realmente crees que si hubiera podido reducirlo a cero en 2 años no lo habría hecho?
It is nice to know where there is a good rheumy for people who end up with ones like your first guy. Where on earth do they get the idea PMR is gone in 6 months?
Thanks for your reply to kathy. You answered my question about pred tapering.
I also found an answer to the DSNS taper method I asked in one of the posts.
Think I will talk my Rheumy in to the taper method or I will get a new Dr.
Thanks Paul
Advice is to reduce by no more than 10% at a time, and stay at new dose, whether using DSNS method or another, long enough to make sure it is effective before reducing further. In my experience the lower the dose, the slower the taper needs to be, and the longer one should remain at each new level. At lower doses the good thing is that any side effects are also much reduced or absent.
Interesante que menciones el dolor miofascial. No lo tengo (¡todavía!), pero sí tengo problemas en los pies que relaciono con la PMR/prednisona. Mi cuerpo necesita los 8 mg de prednisona en este momento... Parece que no reconozco ningún efecto secundario en este momento. El próximo mes hablaré nuevamente con mi reumatólogo sobre Actemra, que puede o no estar disponible para mí. No me gusta lo que leo sobre estos medicamentos biológicos, particularmente porque la prednisona parece estar funcionando tan efectivamente y también hay riesgos serios asociados con el Actemra. ¿Por qué cambiar de medicamentos?
Nunca he considerado la absorción de la prednisona... pero generalmente requiero una dosis más alta de medicación que el oso promedio.
¡Muy buena idea! ¡Muchas gracias!
Me alegra saber de alguien más con un problema similar 😊 Admito que culpo toda la niebla mental a la prednisona... así que, cuando olvido las reglas de reducción, soy inmediatamente castigado y debo comenzar de nuevo. Siempre es un gran contratiempo. ¡El método DSNS es la mejor oportunidad para reducir!
Gracias.
Vi a mi nuevo reumatólogo, amigo de la prednisona, ayer. Pasó una hora entera conmigo, revisando mis análisis de sangre y pruebas anteriores. Se escandalizó por la forma en que se había manejado mi condición desde el principio y por haber reducido la dosis cuando mis marcadores se han mantenido altos desde el comienzo. Cuando le dije que me había roto la pelvis y que quizá el antiguo reumatólogo pensó que el CRP y el ESR altos se debían a las fracturas, miró el informe del escáner y dijo que no estaba de acuerdo. Cuando le dije que el antiguo reumatólogo me había dicho que redujera la dosis de 20 a 5 mg en tres semanas, se rió y movió la cabeza. Dijo que se puede romper un hueso por una deficiencia de vitamina D sin tener osteoporosis y que mis fracturas ocurrieron solo un mes después de empezar con la prednisona, por lo que no eran culpables.
Parecía estar de acuerdo con todo lo que he aprendido aquí, me dijo que no tuviera prisa por reducir la dosis, que alternara la nueva dosis con la antigua, etc., pero dice que los síntomas que describo suenan más como arteritis de células gigantes (GCA) que como polimialgia reumática (PMR), pero que debido al manejo caótico de mi caso, está un poco confundido y quiere que pruebe el metotrexato. Realmente no quiero, pero como parece genuinamente interesado en mi caso y muy conocedor sobre GCA/PMR, supongo que debo darle una oportunidad, ya que no me he sentido muy bien ni siquiera con 20 mg.
¿Qué opinan? Odio la idea del metotrexato que no hace efecto hasta después de 6 semanas. Me preguntaba si hay alguien aquí que haya tenido una buena experiencia con el metotrexato.
I don't know about on here but I do know a couple of people who have taken mtx with no problems at all and are sure it has allowed them to reduce their pred dose. They aren't GCA patients though.
How long it takes to kick in varies - and I don't think the 6 weeks is any more likely than any other guess. Some experts say it is as much as a year before they can see any real differences between using and not using it in PMR/GCA. If you can take it without any problems I think it is probably worth trying it - but not if the side effects make you feel even more ill than you do anyway.
I wonder if he thinks there may be something else going on. I imagine that if he wanted to try you with tocilizumab at any point he would also have had to have you "fail" DMARDs.
He sounds a find though - especially having been so up-front about the mess you have been through.