Pmr and how long to stay at 5 mg. prednisone
Posted , 12 users are following.
I got pmr in sept. 2016 and am currently finishing up my 30 days at 5 mg. prednisone, using the dsns method, my question is: how long do you think I should stay at 5 mg. before trying to go to dsns 4 1/2 mg? I have read the information about one doctor who keeps his patients at 5 mg, for 9 months and never has a relapse. And my gp who is wonderful has said that once you get to 5 mg,, there is no hurry to get off--you can stay at 5 mg for "as long as it takes." (Yep, yes wonderful, even though he says he is not a pmr/prednisone expert). And he has given me a year's prescription for 5 mg. pred (in 1 mg. tablets because I'm using the split dose method).
Here is the reason for my question: I'm not one of the lucky ones. I feel like I've been hit by a freight train most of the time. Never exactly pain free. Low energy. Can't sleep. Anxious. Brain fog. Constipated. Occasional fatigue. The list which you all know too well, goes on and on,
part of me says, like most of the posters on this forum, get off the stuff as soon as possible, the other part says maybe if I stay at 5 mg. longer, some of the pmr inflammation will die out as time goes on, the traditional dilemma, right?
so please let me know what you think...I'm debating because I'm not really any worse than I've been but I'm sure not one bit better. 50% of me says it's the pmr; 50% of me says it's the prednisone (I've read posts that said once patients get off the pred, they feel like their old selves again.). I'm debating which is which. Thank you very much!
0 likes, 17 replies
Michdonn Twopies
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Twopies Michdonn
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Thank you, mitchdonn! Always nice to hear from you, even though skiing and bike riding seems other worldly to me! I'm using the 52 day dsns method and am at the point where I could start on the 1 new dose, 6 old dose phase. That's how I got to the 5 mg. where I am now. Like you, I try to push myself, I always have so its hard to lay low, bide my time and keep smiling. However, since I've never been pain free with pmr, it's hard to figure out when I'm pushing it too fast or just coping with the disease. It sure isn't smooth sailing, is it? Thanks for your reply, it always does make me smile!
Michdonn Twopies
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BettyE Twopies
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It takes as long as it takes and we really are all different.
It sounds as though you have one of the more enlightened GP.
It does not sound as though you are all that comfortable so hurrying to get below 5 does not sound helpful. You are at a dose where you'll need your adrenals to start picking up the tab. If you are low on cortisol that might account for some of your rubbish feelings. I think I'd vote for not going any lower for a while and even considering increasing if your symptoms don't improve.
Jan./ Feb./ early March 2012
There have been times when I really thought I was improving but each time it has been short-lived. This is very disheartening and I know that I am no longer the optimistic and confident person I was.
I have more or less stopped the Paracetamol. The pain relief was not much more than minimal overall as time went on and I also had very considerable stomach discomfort even though I always took them with food.
I reduced the Prednisolone to3mgs. very gradually but each reduction brought an increase in pain. When I tried 2.5 / 3 / 3 / 2.5 for a week the pain became intolerable and I increased to 5 on Sunday 4th March. This has helped somewhat but I feel very low on occasion. How much of this can be attributed to the actual physical pain and how much to the dispiriting effect of the restrictions it imposes I do not know. But I do know there have been days when I felt more than a little unwell
Walking is not a pleasure to put it mildly. Neck pain remains and often shoulders hurt,too.
How to know which pain is which?
My feeling is that the PMR has not gone, though.
****************************************************************
The bit in italics is from my diary when I d been on steroids for more than four years. I had a hip replacement the following May and was told to still keep taking the 1mg. dose which I'd finally achieved. It was October 2013 before I finally got to zero. I am as back to normal as I have any right to expect and no PMR.
You will get there but not at a time of your choosing. Best wishes.
BettyE
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The links in that piece are nothing to do with me. Don't know why they have popped up.
Twopies BettyE
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thank you so much, Bettye! Your statement about how to know which pain is which sounds familiar--if I do the least little thing--plant a pot of flowers, shred a stack of papers, crawl around on the floor of the closet--I feel it the next day. Not normal, I tel myself. It's so life limiting,
you mentioned I'm at the point where my adrenals will start to kick in--I think I'm struggling. Teary eyed, up at 4:00 a.m. most of the time, extremely tired late afternoon, etc. any ballpark idea how long it takes for the adrenals to kick in? I've read months, I've read years, etc. just wondering what your experience was.
thank for the good Information; thanks for sharing your experience, much appreciated.
BettyE Twopies
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I really can't give you an informed estimate of how long before my adrenals were fully functioning as I did not have any relevant tests.
As I mentioned, by the time of my hip op in May 2013 I had reduced to 1 mg. and I seem to remember
that by then my main concern was the hip pain. The pharmacist who was part of my pre op programme said on no account to stop the 1mg. until the surgeon signed me off so she must have thought even that dose was important. The op was so successful I think it must have given me an over all lift. I was home in just over 48 hours and walking unaided in less than four weeks which to my unqualified mind indicates that my system as a whole must have been in pretty good nick. That's about as near as I can get, I'm afraid.
My OA is ongoing and I'm a lot older so do get stiff especially in the mornings. I've fairly recently had ESR and CRP which registered in the normal range.
Twopies BettyE
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EileenH BettyE
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It's a new function - and I suspect automatic so maybe your post appears if someone searches neck pain for example or if you click on the blue words you will get patient's advice page.
BettyE EileenH
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EileenH BettyE
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nick67069 Twopies
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I can tell you how it went for me at 5mg...
-In Sep 2016 I reduced to 5mg and stayed on that dose for 2 months. When I tried to reduce to 4.5, my symptoms worsened, so after 3 weeks of taper I went back to 5mg. I stayed on 5mg for next 5 months, until I felt ready for next reduction, which was in May 2017.
-I had no issue reducing to 4.5 in May and to 4.0 in July 2017, but then I could not reduce any further.
-I tried in August to reduce to 3.5 but had to quit and go back to 4.0
-Next time in Feb 2018 I reduced from 4.0 to 3.5 .
- I attempted reduction to 3.0 in March, but had to give up...
Which brings us to today, I am in the middle of 3.5-> 3.0 taper and it seems it is working.
As you can see I am very careful and I reduce very slowly, but I never had a flair. As soon as I notice change in symptoms, I go back to "safe" dose. My thinking is that PMR last on the average 5.9 years, so I am in my 3rd, close to half point. Also, after dose was reduced to below physiological level ( 7-8mg) most of the side effects of prednisone are gone and adrenals need time to restart again and start producing cortisol.
Bottom line, you are at low dose ( 5mg), don't rush, don't push it too far. It is not worth it. You can only reduce as much as PMR activity lets you. If you reduce further you will suffer and may have to go back to much higher dose.
Twopies nick67069
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Wow, what a journey! Ok, here is the $64,000 question: why did you give up at a stopping point? what was it that made you decide it wasn't worth it, that you needed to go back up? Since I've never been pain free, always feel a little stiff and sore, especially in the mornings, always feel sore the next day after an activity, can't stand for very long, etc., how can I tell if it's just the ole pmr or a sign that I need to go back up a little?
From the replies I've received, it sounds like I need to stay at 5 mg. where I am for a while longer in the hopes I will feel better...that's always the hope, isn't it? I finished up the 52nd day of the dsns method yesterday. You mentioned a change in your symptoms was your clue --I haven't really had a change, other than I've been able to walk a little more--5500-6000 steps each day now. Thank you for al your help, and for sharing your experience, the reminder that this stuff likely will hang around for awhile was helpful--I tend to forget (or deny!)
nick67069
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"Ok, here is the $64,000 question: why did you give up at a stopping point? what was it that made you decide it wasn't worth it, that you needed to go back up? "
Everyone is different and it might be hard to generalize and still give you useful answer, but I will try...
1.-why did you give up at a stopping point
I pay attention to how I feel from the moment I get up until it is time to sleep. I pay attention how much stiffness I have in the morning and how I feel after morning walk/stretch. Am I tired in the afternoon or evening, etc. As you know I exercise vigorously 3-4 times a week and how I feel during the exercise and during recovery, same day or next is another data point. Every bit counts. You have to learn to listen to your body. Since everyone is different and PMR has many variants, it is rather personal. For me, any deviation from normal, any worsening of the symptoms is a reason for going back to "safe" dose.
2-"what was it that made you decide it wasn't worth it"
This is almost philosophical question. I want to live certain lifestyle for reminder of my life. If PMR is going to be with me for 4-6 years, that may be half, or third or a quarter of the "rest of my life". So why compromise? I would rather manage PMR symptoms by taking proper dose of pred then sacrifice and live with limitations.
I hope this makes sense to you.
EileenH nick67069
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It is ALL about quality of life. If only some doctors could get that into their skulls...
Michdonn nick67069
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