New to PMR, Is this the "normal" or is it a flare up
Posted , 12 users are following.
As a new patient recently diagnosed with PMR, I am on day five of Prednisone. I take 15 mg and within about 3-4 hours my pain and stiffness is reduced by 90% or more. It is truly miraculous.
However, by around 4:30 am I awake with pain in my shoulders and hands almost worse than before I began the medication. I take my dose and in about 3-4 hours I am great again.
Is this a sign that my dose is too low, i.e. I am having a flare up, or is this the pattern that others experience?
Today I thought I might split my dose (10 morning and 5 later in the evening) but the pain was so bad I went ahead and took the 5mg about an hour later. Perhaps I should have waited a few more hours but I needed relief.
I understand each of us is different but I value the input of others who understand first hand what I am going through.
thanks
0 likes, 27 replies
ann3035 gilman
Posted
mike42494 gilman
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it has been a miracle drug for my chronic pain. I have weaned off 4 other pain meds that I have been taking for 12 years.
The side effects of my other meds caused Stage 4 Kidney Disease so I will put up with the few side effects from Pred. To be pain free.
LayneTX gilman
Posted
15 mg for a week, like you, but maybe only 5% better, so Doctor up'd it to 20 mg for week. This helped to be better, though I feel Doctor was expecting no pain from Pred, but I learned for some even a 30% decrease in pain is good. I stayed at 30% pain for quite a while. Sometimes from what Eileen has said I wonder if I should have stayed higher for longer.
The CGA folks on here, bless their hearts, start at like 60 mg.
from what I've learned in reading here, I personally wouldn't split dose this soon. My pains always got better about 4-6 hours after Pred kicked in. Eileen said it would be optimum to take Pred at 2:00 a.m. But not many of us want to get up then on purpose! Ha.
good luck my friend.
angelcake61 gilman
Posted
Hope you get sorted soon
EileenH gilman
Posted
The antiinflammatory effect of pred lasts between 12 and 36 hours, depending on the person. Every morning a new batch of the inflammatory substances that are the root cause of the pain and stiffness is shed in the body at about 4.30am. If the new lot is too much for the remaining effect to combat - back comes the pain and stiffness. Almost everyone wakes in pain and stiff. Many of us take our pred very early and settle down for another couple of hours by which time the pred is taking effect.
A study found that for the plain white uncoated variety of pred, the optimum time to take it to avoid the morning stiffness is 2am - it has reached its maximum level in the blood by soon after 4am, the inflammation has no chance to take hold. I know several people who do that very successfully and I am on a special form of prednisone that you take before bed, it releases during the night about 2am and the result is NO MORNING STIFFNESS! Unfortunately it isn't available on the NHS in the UK and is very expensive (even more so in the USA).
But look at what you are trying to do - it is probbaly too much and you need to cut back a bit.
gilman EileenH
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kathy67492 EileenH
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gilman EileenH
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EileenH kathy67492
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There is one lady who decided to become a "Precious Princess" and didn't do a lot of things - it did lead to being able to reduce the dose without as many problems and it definitely allowed several "add-ons" (bursitis and stuff) to heal properly so she eventually got to what seems to so many to be their Holy Grail - zero pred. About 5 or 6 months later the stiffness and discomfort started again - rheumy confirmed what she knew in her heart: PMR was back. This time she says she's totally happy on her 7.5mg and although she does attempt reductions she doesn't feel the same desperation to get off pred. Quality of life is the A and O.
You might give up doing EVERYTHING - but that isn't good either, some gentle exercise is really very very useful and needed in PMR for all sorts of reasons - but would that make life any more worth living just to take a couple of mg less pred?
What would probably be better is to draw up a very gentle exercise programme - a study on PMR in the north of England is doing that by giving patients pedometers and encouraging them to increase their walking steadily. That alone is a good start - it doesn't have to be the gym if you can't manage it. Studies in Austrai have shown that keeping walking makes a major difference to people as they age and to diabetes, raised cholesterol and other things. It's all to do with mitochondria - the power houses of your cells.
EileenH gilman
Posted
Some people always have some morning stiffnes until the pred kicks in. I don't - the pred is there at 4am and does the job long before I wake usually. Sometimes I wake then but I'm not stiff or in pain. But that is a particular, not widely available form of pred.
Elijo gilman
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whitefishbay gilman
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Good luck.
EileenH whitefishbay
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gilman
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I guess that is normal. I might try the 2:00 am dosage suggestion. If it were not for the darn morning pain I would think I were cured. It was just so severe this morning I couldn't try a split dose on the chance that it would be insufficient to provide me any relief. I might try to do it another day though.
As an aside I went to Physical Therapy, which I had been referred to when the doctors thought I had tendinitis in my right shoulder. They were amazed how improved I was, able to do excercises and movements I couldn't have dreamt of only a few days ago, prior to the Prednisone.
Thanks to you all. I wish more folks in the medical community were as responsive as members of this forum. I certainly do not feel alone.
EileenH gilman
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Careful - PT must be adapted to PMR or it just makes things more uncomfortable rather than better. Is that perhaps why you were so bad this morning???????
No - never think "cured", this is "long term management".
gilman EileenH
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LayneTX gilman
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Though he said he knew what PMR was. Ha. He worked me out like an athlete. Now I fear PTs.
I reitterate this just so others know. Some PTs don't really understand.