Judt had my 3 week follow up with GP (PMR diagnosed and on 15mg daily) and during this I mentioned that my sleep was being disturbed due to, I believe, the Prednisolone. I explained that I had been taking 1x 5mg with every meal (3 a day) and so I was experimenting with taking 2 at lunchtime, none in the evening. She then ‘exclaimed’ that I was supposed to be taking it all at once first thing in the morning, however that’s not what’s written on my drugs box. It said “take 3 x 5mg daily with MEALS”. So as with most drugs I thought it was supposed to be spaced out through the day as best as possible. Anyway I’m now taking all 3 first thing with breakfast and whilst I think that might take some time to get used to (mornings now seem quite hyper and difficult to concentrate ), the pain and discomfort are returning in the evening and when I wake up. Maybe my idea of spacing the dosage out was actually better.
Anyone else made this ‘mistake’ or have any comments, I’d be most grateful.
I have now asked to be referred to a rheumatologist (private) as I’m not at all confident in my GP’s knowledge of PMR
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Windy183
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Hello, Windy183. Your GP was correct. You should have been taking the whole 15mg Pred in one dose in the morning, preferably around 8am with breakfast as it mimics the timing of your own body's production of cortisone. Someone will be along to explain this in a more scientific way. I'm not surprised that your symptoms aren't being relieved.
I can see that the labelling on the box containing your Pred may be confusing and this should be rectified.
Thank you! Yes clearly I was misled by the labelling, however my symptom relief was much better with the dosage spread out it seems. So that’s something to discuss with my consultant when I get to see one. Thank goodness this group exists.
Most of us will never had heard of PMR before being diagnosed and it's often left for patients to discover for themselves what it's all about. The following link gives information but please take the '2year' comment regarding length of time to remission with a pinch of salt:
I had a similar issue when I first started taking pred with the pain coming back later in the day. It seemed that for me the effects of the pred lasted just around twelve hours. For some it lasts the full twenty four hours, but, as we all have a different metabolism, you don’t really know what works best for you until you try it.
In the end, I took two thirds of the dose in the morning, and the last third at night, and that worked better for me,
I don’t believe there is any hard and fast rule, and there are many on the Forum who split their dose to suit their individual circumstances..
The "correct" way to take pred for PMR/GCA is as a single dose in the morning. There are claims that mimics the body's natural production of corticosteroid but since they usually say 9am - it is rather late by the time it gets into the system at 10am. The peak for cortisol is immediately after our usual waking time - more like 7am I'd imagine!
That aside, the earlier in the day you take the pred, the more likely it is that you will be able to sleep better at night. Also, the trigger for the body to produce its own cortisol is a low level of corticosteroid in the body at midnight - that is more likely if the pred was taken as early as possible and all together.
And in terms of the inflammation in PMR, you really do need the steroid at a high level in the morning to combat the inflammation which is only created in the body once a day, about 4-430am, when the inflammatory substances are shed in the body and start creating inflammation in the relevant tissues. Think of it like cleaning - if you clean the oven thoroughly with a effective cleaner immediately after a spill, it is easier to get clean. Dab at it ineffectively with a bit of paper towel and it won't be as good - even if you return to it 2 or 3 times later. And the basis remains for the next lot the next morning.
Although you are having more morning problems at the moment that is partly because you haven't had a decent spring clean. With time, the effect should last longer but the antiinflammatory effect of pred lasts 12-36 hours and in some people the symptoms do start to reappear before the next dose is due. Then it may be better to split the dose but with about 2/3 in the morning and the rest sufficiently later in the day to extend the effect to 24 hours. But you do need to learn how pred works for you and your body. It is also possible that you would get a longer lasting effect with a slightly higher dose - 15mg is the bottom end of the recommended starting dose with is 12.5-25mg/day.
And YOU have to do your bit - the relief of symptoms using pred is a management strategy not a cure. The disease process is still ongoing in your body and has an effect similar to having flu. You have to do your part and look after yourself - pacing and resting is essential. Your muscles and other tissues are under attack from the autoimmune disorder and aren't able to do what they did before in a healthy state. Do too much and you will feel worse - and may develop DOMS, delayed onset muscle soreness, like that you get when you have overdone things but now it develops far sooner and more easily than when you were healthy and takes longer to resolve.
Morning Windy183, I like any others here take mine around 02:00-03:00 so that the Pred is properly in the system before the "nasties" come out to play around 04:00-04:30. I've had no problems on lasting through the day and in real terms pain free. Also I had a higher starting dose than you and as pro says an increased dose for a few weeks might clear things out better and then slow taper down.
I take mine at 2am in the morning with hard cheese. If you are seeing a rheumatologist make sure they know about PMR. I saw a rheumatologist privately and he was a disaster. I was a cash cow. He also wanted me to reduce 5mg initially which caused me real problems. His one plus was that he diagnosed PMR while my GP had said it was nothing serious and probably a virus over a period of about three months. In the end I could hardly get out of bed.
Thank you. I’ve researched the consultant rheumatologists available to me through my insurance and have identified 2 who have PMR specialism in their resume. Cross fingers that means they know what they are talking about.
Mine was a Harley Street consultant who claimed he knew about PMR. Basically he just gave steroids which of course gave the impression of a magical effect. He then felt he had sorted everything out. It also did not help that he used to meet me with a bear hug!!! I just gave him up much to his frustration.
I have found that so many rheumatologists say they can help with GCA and or PMR. Nearly all have never even had a patient with these diseases. They learned about it in med school! Quite scary.
Sorry, I should have said…I do have issues with my legs but it’s not connected with the tremor…eg I have sciatica, osteoarthritis in hips & toes, the muscles that attach to my hips have bone growing on them, that sort of issue, which has been diagnosed, but us quite separate. I also have fibromyalgia, which does affect the legs. Let me know if you have other questions, happy to help! S x
Hello Wendy183, I see a rheumatologist and his instructions are to take the full dose in the morning after breakfast (never on an empty stomach). I do have trouble sleeping. I am not sure if that is due to prednisone.
Thank you, yes that appears to be the ‘correct’ way to take them. Funnily enough though that although my sleep is better now I’m taking them first thing all at once, the relief from the PMR was remarkably better taking them throughout the day. Six of one…..etc etc
Give it some time. I hope that you can adapt to the morning dose. I am in the tapering phase and felt slight pain at first, but thankfully feeling good after almost four weeks on the 12.5mg dose. I go down to 10mg tomorrow. Fingers crossed. I never imagined that I would have such a thing to contend with. I had never heard of PMR!
That's genius. What I’m learning is that there is no ‘one size fits all’ regime for taking this drug so it’s up to me to find what suits my lifestyle and my symptoms. Every one that replies helps that process. Thank you so much
Absolutely not!! That is an example of the splitting i mentioned. And often it doesn't need to be taken as late as that, for some people that would disturb their sleep. But it is always a good idea to start with the all at once in the morning regime to get to know your body, your PMR and your reaction to pred.
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