Just been diagnosed with PMR after a painful Christmas. Started with 20mg dose for 5 days, then down to 15mg. Initially got some relief after taking steroids at 10am, but got woken with pain at 4am next morning. Got up at 6am to eat and take my second dose,which kept me going relatively pain free till 4am again. This time, I held on till breakfast at 8am. Am I being too impatient to expect pain relief so early into the medication?
I had never heard of PMR before. It certainly made for a difficult Xmas.
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Charlie1boy
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If it makes a difference - it does sound as if it is PMR. One of the signatures of PMR is that there is a response of 70% overall in symptoms within a very short time. I responded in 6 hours!
Part of the problem you are experiencing is that the antiinflammatory effect of pred lasts between 12 and 36 hours depending on the patient. I am lucky in that it last a good 36 hours - it sounds as if for you it is about 18-20 hours. Sometimes patient split their dose and take 2/3 in the early morning and the other third in the evening if the overnight pain is intolerable. That should be a final resort though.
The most important thing is to take the full dose as early as possible in the morning - as you found with your 6am dose. Studies have shown that the optimum time is actually at 2am - it take a couple of hours to reach the peak level in the body, so about 4am, and the substances that cause the inflammation in PMR are shed in the body at about 4.30am. The longer you wait after that the more inflammation the pred has to deal with, if you have the pred in your system already then the inflammation doesn't get a hold.
Also - does the username charlieboy mean you are male? Are you well built? It is finally sinking in that the pred dose should bear some relationship to patient weight to achieve a good result. 15mg for a 70 kilo woman will achieve more than for a 90kg male so maybe the higher starting dose should have been continued for longer. I hope, too, your doctor isn't going to reduce the dose at that rate again. PMR is a chronic problem, not one you take a 6 week course of pred and that is it - it is more like 2 years or often longer. And reductions need to be in smaller steps. Men do seem to recover faster though.
This is a link to a paper aimed at GPs to help them manage PMR without recourse to specialist help. You may understand it, a lot of it isn't particularly medical, but it suggests a reduction scheme over 2 years - show it to your doctor if they try to reduce your dose over a shorter time. You are looking first of all to combat all the existing inflammation at the higher dose and then you reduce it gradually to find the lowest dose that manages the symptoms.
That is a really helpful reply, and I will take the pred earlier. Yes, I am male, and weigh in at about 75 kilos, so it does appear that 20mg is correct for starters.
I have my next GP appointment on 14th Jan after a blood test 2 days earlier, so I will see how we are doing then.
Meanwhile, yes, the 2 and a half hour to 3 hour kick in time for the press to work is what I am experiencing.
PMRpro I gave my Rheumy a copy of that, and still they insist on a reduction of 40mg for 2 wks 30mg for 2 wks and then down to 20mg for 2 wks they can't seem to budge from what they have always done and not what works for people suffering with PMR/GCA
I think part of that is because they are so sure it isn't GCA though - they just want to get you back to the PMR dose as fast as they can to avoid the side effects of high dose pred.
If the symptoms return on the lower doses I think you really have to consider going to see someone else who will listen and discuss the situation.
Just read your paper, which I found very interesting and helpful.
I have one further question re your initial reply:
Does the body build up a base supply of preds once I have started on them, or does the whole 20mg get used up fighting the inflammation each time I take them? If it is the latter, then is 20mg adequate bearing in mind the pain returns after 18 hours or so?
No, the half life of pred is between 2 and 4 hours, so the vast majority of the substance itself has been removed from the body well within 24 hours after taking it. The antiinflammatory effect however lasts much longer. If there is a lot of inflammation then it may take longer at the initial dose to clear it all. If you give a lower dose then it usually takes longer to get the maximum "clear out" but it does usually get there, higher doses are faster but put you at risk of more side effects and that is what they are scared of, sometimes, it seems, unreasonably so.
In addition to trying to avoid side effects, the other thing that persuades them to use a lower dose is that PMR is unique amongst rheumatic/arthritic disorders in responding so dramatically to a moderate dose of pred - if 15mg does the trick it is almost diagnostic of PMR. Had they given 30mg then other arthritides will also be relieved so confusing the picture.
I'm a bit surprised though that your doctor started with 20mg and then dropped it so soon - you should have been kept at that dose for at least a month, maybe a bit longer, until the symptoms had improved as much as possible. You have to "clear the decks" of inflammation before reducing the dose to identify the lowest dose that manages the symptoms - because that is all you can do. There is no cure and the pred has no effect on the actual cause of the symptoms, the underlying autoimmune disorder.
As I said before, I hope your GP doesn't insist you reduce any further until your symptoms are well controlled. You may not be fully pain-free, few people are whatever dose they are on, but there should have been at least a 70% global improvement. Many people find they become stiff overnight - partly because of the muscle stiffening or myogelosis that occurs when you aren't moving about. Often people find they have less stiffness after a bad night where they toss and turn, or that they are not stiff if they wake and go to the loo at 3am but by the time they get up they are stiff. Some people find using an electric blanket in the morning BEFORE getting out of bed helps - or a warm shower and starting gentle stretching exercises. Once the muscles are being used gently they become less stiff and it becomes a spiraling improvement, you can move a bit more, you become a bit less stiff.
And as I mentioned, for some people taking about 2/3 of the total dose in the early morning gives them a fairly good day once they get moving and then they can take the other 1/3 in the evening to allow a better morning. Everyone is different, a bit of experimentation is not a bad thing. If you have a broadminded doctor take the paper to him and discuss it with him. He may agree to allowing 20mg for a few weeks to get the inflammation under control. If he doesn't, maybe another member of the practice will be more helpful. The greatest risk is that the dose is dropped too far too fast and the symptoms flare - yoyoing the dose is asking for trouble as it becomes harder to control the inflammation.
Thank you again. Yes, I think it makes sense to ask my GP to stay on 20mg if the inflammation continues to cause me problems. I suspect she will agree to that, as she recommended the higher dose to begin with as the inflammation was quite severe; she gave the impression about being flexible in the early stages to see how it goes.
Thank you taking the trouble to answer my queries so clearly.
In that case, I would ask her if you can go back to 20mg and stay there for at least a month. Then don't reduce by 5mg, 2.5mg is more than enough at one go, less would be even better.
Hi Charlie1boy. I too am an early traveller on the PMR road. I was diagnosed last November by my doctor by trying me on 30mg of pred with a quick reduction to 10mg which was too low. I was then given rheumy appointment in 2 weeks so I came off the pred as I wanted the specialist to see me at my worst as my bloods were normal. Boy was I at my worst! But it was worth it as the had to agree with my doctor that it was PMR. I had more bloods done and a chest xray and he started me on 15mg with a view to reducing each 3 weeks by 2.5mg??! I did 1 month on 15 then saw my doctor with printouts of advice from here and she said she would support whatever I thought best for me. I have done 3 weeks on 12.5 and tried alternate days of 10 /12.5 but have gone back to 12.5 and have got 1mg from my doctor to slow down my reduction. By the way, I set my alarm for 2am and take them then with a banana or yoghurt and I find this gives me the best results after trying different times. I have to force myself not to rush this whole thing as I certainly don't want a flare up and have to start again. Hope you find what works best for you soon. ?
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