i was down to 5 mg. pred on the dead slow and nearly stop method, doing ok. But when I tried to go to 4 mg., my symptoms started to return so I went back up to 5 mg. for 10 days and recovered back to where I was doing ok again. This morning I took 4 1/2 mg. Here are my questions, I'm hoping someone can help please: 1) should I have stayed at 5 mg. for a full 30 days to continue to let my body adjust or was it ok to go down to 4 1/2 mg like I did because I was feeling ok? 2) if it's ok to go on the dsns method, do I go back on it now (meaning tomorrow I will go back up to 5 mg.) or should I stay at 4 1/2 mg. to see if I can tolerate it? Thanks!
Hi, Twopies: I have not been following the forum regularly, so I do not know your history. How long have you had PMR? How long have you been on prednisone, and how long at 5 mg? Did you have any symptoms at 5 mg?
I sounds (and I may be wrong) as though you think that the dead slow method leads to getting off prednisone? All it does is provide the best way to slowly reduce until you get to the lowest dose that will control your PMR. As long as you have PMR (out of your control!), you will need prednisone to control the symptoms.
Also, as others will point out, 5 mg is often a breakpoint when reducing gets much harder as your own adrenals, which have been suppressed by the prednisone, start to kick in again.
I can't say anything more without knowing more about our recent history, but I suspect you need to stay on 5 mg at least until you stabilize there.
Tenho tido exatamente o mesmo cenário que você - após 3 anos e meio, estou reduzindo para 4 mg e então "isso" começou!
Eu aumentuei para 4 ½ mg por um mês, sem efeito, então aumentuei para 5 mg e estou assim há três meses e a dor geral parece ter diminuído um pouco - mas não completamente. Vou dar mais um mês e ver o que acontece. Pode ser que eu aumente mais meio mg então.
Definitivamente vejo que pequenos aumentos incrementais (½ mg) parecem ter um efeito e não é necessário tomar "grandes" saltos. Como Eileen sempre diz - DEVAGAR é o melhor!
Espero que funcione para você.
Dave
Também percebo que, nestas doses mais baixas, há uma certa flutuação a ser esperada em termos da dosagem necessária.
Eu estava indo bem com apenas 1,75 mg por alguns meses no início deste ano (essa foi minha menor dosagem em meus 3 anos e meio com PRM), mas, talvez devido a mudanças aleatórias e sazonais em minhas atividades e estilo de vida, tive que aumentar para 7 mg a fim de controlar a inflamação (bursite) nas áreas do meu ombro e braço superior. Então, alguns meses depois, consegui reduzir confortavelmente para 3 mg, com os habituais sintomas de fadiga leve e esqueléticos pelo caminho. Suspeito que nos próximos seis meses eu possa chegar perto de zero este ano, já que cada ano tem sido um pouco melhor que o anterior.
Portanto, não reduza muito rápido após qualquer aumento de dosagem que dure semanas. Também pode considerar "aumentar" qualquer pico súbito nos sintomas com uma dose maior a curto prazo, como alguns têm defendido como uma forma de controlar o típico flutuação periódica dos sintomas.
Hoje em dia, tomo minha pequena dosagem de prednisolona todas as noites, então acordo com menos sintomas. Por isso, prefiro fazer meu exercício preferido e bem tolerado pela manhã, enquanto minha energia está alta e minha dosagem da noite anterior ainda está agindo eficazmente. Não tenho problema em aguardar as 24 horas completas até a noite seguinte, embora possa começar a sentir os sintomas voltando lentamente por essa hora, o que me informa imediatamente se o nível atual da minha dosagem está sendo suficientemente eficaz. É assim que eu julgo se alguma ajuste de dosagem precisa ser feito, sem que a flutuação dos sintomas afete muito as horas de sono e as horas de trabalho de cada dia.
If you are finding the symptoms are returning at a specific dose - the chances are you have got to the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. However slowly you go, whatever tricks are suggested, you won't get past that hurdle. Or at least, not yet.
As has already been mentioned - this is also the point where your adrenal glands need to achieve a staged return to work. 5mg is a low dose, the side effects are minimal. One top rheumy likes to keep his patients at 5mg for anything up to9 months - just to let their body catch up.
If you have symptoms - don't force it. There is no virtue in "managing" just to say you are on 1/2mg less - you run the risk of the dripping tap of inflammation filling the bucket and overflowing.
If it were me, I'd be back at 5mg and taking a rest from the fiddle and worry of reducing for atleast 2 or 3 months. Then it'll be winter - not a good time to reduce
I got pmr last August, was bedridden by late September when I started the prednisone. 20 then 15 then 12.5, 10, 9, 8, 7, 6, flared, then back up to 7, and 6 again. Started 5 on dead slow method. As soon as I got to the "6 new, 1 old" I started to have pain and stiffness in my hips and legs. So I stayed at 5 mg. for another 10 days. And I'm feeling better. So my question is do I keep at 5 mg. (I'm feeling better again) for awhile...if so how long, do you think? Or is it ok to resume the nearly dead but this time at 4.5 mg? I know it's guesswork--I'm just trying to figure out what to do from more experienced people (even though we are all different). My doc keeps saying it usually goes away in a year but that seems to be the exception....
that is part of my question too: when you complete one cycle of the dead slow method and you feel ok, do you start right in in the next reduction or do you stay there for 30 days before continuing with the next cycle? I stayed at 10 days, because my flare was gone, thus I thought it was ok to go to the next cycle. thanks
Oi Twopies,
parece ficar complicado quando você chega perto de 4mg! Tenho PMR há 4 anos e meio e consegui chegar a 4mg usando o método DSNS (na verdade, até mais devagar que isso às vezes). Fiquei em 4mg por mais de 6 meses e me sentindo bem, então decidi tentar 3,5. ISSO NÃO FUNCIONOU! Cheguei à semana 3 e começou. Deixei ir longe demais sem saber se era abstinência ou uma recaída e, quando decidi aumentar, acabei tentando 5mg, 7mg, 10mg e finalmente acertei com 15mg, onde fiquei por cerca de 3 dias até os sintomas estarem basicamente de volta ao que estavam em 4mg. No início, fiquei tão chateada porque tinha visões do longo caminho de volta, mas consegui, em algumas semanas, voltar para 5mg e, após uma tentativa frustrada em 4mg, decidi que 5mg era o que funcionava para mim. Ainda estou lá depois de 3 meses e, porque vou viajar em breve, decidi ficar em 5mg até me acalmar novamente.
Meu objetivo não é chegar a zero, embora seria incrível, mas estar na dose mais baixa que me permita fazer as coisas que quero fazer (na maioria).
Espero que você chegue à sua dose "melhor" logo. Tão frustrante quanto é a PMR, a paciência é a chave,
Abraços,
Diana💐
That's the problem, isn't it, Dave? Trying to figure out how to keep the "it" at bay! I'm trying to figure out what "stabilize" actually means for my body. Like everyone else, I guess, I want to get off the pred asap because of the side effects and the toll it's taken on my body...plus I'm not a patient person. So when you go slow, how slow is that, I wonder? It sounds like you are using a sensible approach...thanks for sharing!
Minha própria experiência é apenas a minha própria experiência, mas diria que o outono e o inverno têm sido, com mais frequência, os meses em que consegui fazer reduções maiores para novas doses mais baixas.
Uma exceção foi meu primeiro ano com pred, quando a fumaça de incêndios florestais sazonais encurtou meu regime de exercícios habitual ao mesmo tempo em que estava reduzindo de 10mg para 5mg. Esse inverno não foi tão bom, e eu estava fraco e miserável enquanto seguia a prescrição do regime de dosagem do meu reumatologista.
Mas, a cada ano desde então, foram os meses de outono em que notei que poderia reduzir novamente em passos significativos em intervalos mais frequentes.
Portanto, apenas para dizer que estamos cada um na melhor posição para monitorar e regular nossos sintomas e requisitos de dosagem. Não que uma média de resultados de pacientes não seja o melhor preditor do curso que o requisito de dosagem de alguém seguirá, mas que os dados sobre isso talvez não sejam de estudos tão bem controlados quanto preferiríamos.
Como Eileen mencionou, é importante não se envolver demais com o nível de dosagem de pred quando você chegar a 5mg. O pior dos efeitos colaterais do pred certamente já ficou para trás nessa dosagem (já que seu corpo voltou a regular a produção de cortisol), e você não quer que sintomas debilitantes de PMR atrapalhem seus níveis de atividade e exercícios saudáveis. Hora de voltar a viver uma vida sem impedimentos!
Thank you so much...kinda overwhelmed by the responses...thought I was gonna sail through this. Evidently I need to stay at 5 mg for awhile...I was soooo hoping I could start right in at 4.5...I just feel so lost at trying to manage this thing. My doc has given me free reign to do whatever I need to do (which is good) but like I said, I've only met one other person who has it (she lives in another part of the country) so it's a struggle...as I'm sure all of you know and feel. Thanks for your help.
I have recently posted stuff elsewhere. A new retrospective study found that 19% of patients were off pred in 1 year, 37% by 2 years, 50% at 5 years - and 42% of patients were still on pred after 10 years albeit at a low dose below 5mg. An Italian study on methotrexate found at follow-up that one third of patients still required some pred at 6 years, wether or not they had been on methotrexate.
So where on earth they get this idea that PMR lasts 2 years from is beyond me.
I suspect too that where you live has a bearing - wet, cold and windy weather is not good for PMR!
Give it a month - and try half a mg again - and be watchful. It may work OK and you will get lower like you want to do. But this really is the point you have to slow down - not just because of the PMR.
And my mantras: it isn't slow if it works and everyone is different!!
It's not just medicine, Eileen.
I remember Delia Smith saying the same thing about cooking and Monty Don about gardening. Someone, somewhere pontificates, is not challenged or corrected and, lo and behold, it's received wisdom and quoted for years to come.
Yes, I read that on this forum, too...my doc, like I guess a lot of them, says I should expect to be off pred in one year. He says "that's how long it usually takes pmr to resolve itself." The fantasy continues....
Starting back up to 5 tomorrow...sigh. Thanks, everyone, for consoling me.
It is feeling good that matters - not the numbers...
Hi Twopies, every individual PMR case and person is different. You only can determine your correct dosage, be happy that you have a doctor that understand that, many of do not. Listen to your body, it will tell you too much if you are exercising, slow down, take a rest. Do not reduce if you are having any PMR pain. But exercise daily with the goal of increasing a little bit at a time. Stay on the dose where you are comfortable and can exercise PMR pain free before reducing to the next level. Good luck on your journey, I doing mine with a smile on my face! 🙂
I'm up for general advice from anyone here on this topic, and Eileen you have been my pillar of strength on nearly every discussion I follow, bless you, and you partly know my history already. This is quite overwhelming but SO helpful. I've only been on pred (50mg) for 9 weeks now, for both PRM and GCA, and my rheumy has just started to decrease. He has dropped me to 37.5mg for two weeks, then 35, 30 each for two weeks, then 25 for a month. This will take approx 3 months, Then review. Eileen had said in a previous discussion that this was an odd reduction plan and quite large increments at a time....and from this discussion that is certainly the case. It's only been a week on 37.5, yes I'm handling it, (somewhat), as I have back disc issues I'm also babysitting.I had noticed in previous discussions reference to DSNS and wondered what that meant...now I know, but the reductions here are minor to what he has me doing, I just hope I can handle his plan. if I can't and I'm on say 30 or even the 25, and I find the pain returns to a level of intolerance, should I just increase up an increment, and if so for how long? For example, on 30, need to increase to 35...how long should I take 35 before I increase to 37.5 if the 35 is too low? Just a few days, or should one day at 35, the next at 37.5 and then back to 50 or stay a few days on each? The lowest dose tablet on my script is a 5 mg so I cut that in half to give me 2.5mg. I could increase more slowly between the 37.5 and 50 if I wanted to. On saying all this...I'm hoping I won't need to increase but just in case...knowledge is power I always say.