I'm down to 12mg and up until a few weeks ago was feeling ok but am feeling now as if I am running on empty. Is this because of PMR or the reduction of pred? I have beginnings of muscle ache in my upper back and can feel soreness in my neck. It is not bad at the moment but it is there. Do I stick on 12mg and hope if settles down or continue with the slow reduction to 11mg because this is just how I am going to feel as I reduce?
I feel a fraud because I am not as bad as some on here. I am working and do not feel I have to stop and rest during the day but just feel tired all the time. I also feel that it would make no difference if I went to the gym or not. My body seems to be saying no, my head says keep going. Sorry just needed to get that off my chest!
I'm not going to be much help, only to say I'm at the exact same stage as you at the moment, so I can certainly understand where you are coming from. I've gone from 50mg to 17.5 which I've been on for the last 2 weeks and I am not handling this dosage at all. I have both GCA and PMR so I'm confused as to whether my return of some symptoms are the result of a flare, withdrawal symptoms fro pred reduction, or actual pred side effects as some of the things happening are new, as well as the return of a higher level of pain and loss of energy,difficulty walking far etc. We have some absolute gems on here who will be able to steer you in the right direction. I'm sure it won't be long and we will both be back to battling along as best we can in our journey as we live with managing this hiccup as best we can. X
Creo que soy similar a ambos... me quedé atascado o peor desde 5 mg... tuve que volver a subir a 20 mg de pred. de nuevo. El médico intentó Actemra... parecía ayudar con mi PMR pero empeorar mi AR ya que obtuve tendones escleróticos, también me picaron mucho las manos y los pies. Ahora estoy en Cimzia, gran parte de la picazón desapareció, pero el PMR es peor, estoy muy incómodo con el dolor lumbar, nalgas y ahora dolor en el isquiotibial/muslo así como en el cuello, y el dolor de cabeza que persiste aunque está disminuyendo. También parece estar causando retención de agua con pies y pantorrillas ligeramente hinchados, sensación de mareo y picazón. Los baños de hielo no han ayudado mucho. Estoy trabajando en ajustar la dieta para la retención de agua. No sé si dejar el Cimzia o intentarlo por más tiempo. Hasta ahora solo incomodidad, efectos secundarios y sin menos, de hecho, síntomas de PMR peores. Veo a mi médico mañana.
Pero como tú, sigo siendo muy activo y generalmente lo hago mejor cuando lo soy, pero este último mes, no tanto.
Lo siento, esto no es útil, pero suena algo similar. Estoy pensando en pedirle al médico que deje las medicinas, todas menos la pred... aumentar la pred y luego hacer el método DSNS para bajar.. ¿opiniones?
Hi Elizabeth. While I was reducing I sometimes had this too. I had a very good dr who let me manage my reduction myself mainly. So if I had side effects I basically was told to go back to the dose I was comfortable on be patient then after a few weeks (4 usually) I could try again and it worked usually. However we are all so different. I am off Pref now (10 weeks) but another illness seems to have triggered my symptoms.
Good luck you need to find what works for you but the main advice is slowly slowly catch this monkey!
Comparing yourself to others weakens your self esteem! Our symptoms vary from minute to minute and are totally beyond control. Tapering is a journey that requires patience which is not readily available to some of us. I am reducing 1 mg per week and went from 25-20mg so far. I also feel the slight return of pain in my shoulder to elbow area. I will see if it gets better or worse and modify Pred dose. I am learning from others on this site that there is no reward for martyrdom and drugs must be taken to relieve the pain.
Stay in touch with progress or status even if it seems to be going backwards!
If you have to work, then it will take higher dose of pred to overcome PMR limitations. Everyone is unique and you have to pay attention to your symptoms and how your body reacts to reduction. Latest study pointed out that average PMR "session" lasts 5+ years... How much difference does it make if you are on 12mg or 11mg in the time frame of 5-6 years? But it makes big difference in how you feel NOW.
Be nice to yourself and take enough pred to manage properly your PMR symptoms. It makes no sense to try to go "below" the threshold and suffer from symptoms or even worse cause flare. If 12 mg is what it takes, what difference does it make if you stay on 12 mg longer? except you may feel better. I think you get the point.
Yo también estaba haciendo 1 mg por semana, pero siempre he tenido brotes, así que ahora voy a intentar el método Super lento que aprendí en este foro. ¡Buena suerte para ti y para todos con su reducción gradual.!
1mg a week is too fast from here on - you won't know if the dose you are at is still enough. Slow down! 1mg every 2 weeks may be OK as far as 15mg though...
Hi Elizabeth, I am at the same dosage as you, but I will not reduce if I have any PMR pain. I try to listen to my body. I am using a modified DSNS method. 1-4 at this time, will go to 1-5, then 1-6, which is DSNS.
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose,1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
At this point see how you feel, it great I am going 1-5 for the next reduction, but if I have discomfort stay at this I feel good. My Rheumy and I will disagree again, but that's okay as long as I can get the Pred. Good luck, hope the rest of your journey is better, think positive and try to smile. Smiling 🙂
Thank you all for your support and advice. I will stay on 12mg and see how I feel for a while. It is great to be able to post how you feel and get decent feedback. You are all great!
Hi Elizabeth - can't speak for PMR as I have/had GCA only. Doctors told me there will be a surge in side-effects each time prednisone is reduced. They are right, it's not a return of GCA, there is an inner adjustment going on. None of the surges are major and settle after a few days.
I stick to their reduction plan of now reducing 1mg per month. And never had any problems.
Debatí si debía responder a tu comentario y decidí que sí. En mi familia hay 5 hermanos. Mi hermana mayor murió de Mieloma Múltiple, yo tengo Polimialgia Reumática, la siguiente hermana también tiene Mieloma Múltiple, la más joven tiene Cáncer de Mama y está casi ciega por complicaciones de la Quimioterapia, mi hermano es un alcohólico y adicto a las drogas en recuperación. La hermana menor tuvo 3 hijos, lamentablemente 2 de esos niños murieron a los 17 y 24 años respectivamente. En el esquema de las cosas, los errores gramaticales no se acercan a merecer ni un poco de enojo. Todos entendimos lo que quisiste decir y eso es lo que importa. Saludos Kath
Thanks for your reply Reeceregan, it is good to know others are on the same journey and are struggling with the same problems and thoughts. You are right there is lots of support here and I did get some good advice. I hope your journey fairs better soon.
Hi Bethune, thanks for your reply. It is always good to hear others in the same position. Not that you would want anyone to be where I am but you know what I mean...
I hope your dr appointment went well and you were able to make a decision about your meds? It is a tough one and it is about finding what works for you. the DSNS method was working for me and I just need to slow down a little in my life, stay at 12mg for a little while and then continue. I realise this is not a race but I am not a ver patient person so that is another tough part haha. Good luck with your journey.