I have commented on this before but am now unsure once again of what is actually happening when I split my dose. My current dilemma arises from recent rheumy appointment. She wasn’t a fan of my taking 7 mg at night usually around 9/10pm or when I remembered and then 3mg in morning usually around 8. I seemed to sleep well enough, bit hot at times, but nothing I hadn’t been dealing with as a 50 something year old. She talked about the physiological dose and that it was better therefore to take my dose in morning. I tried to change the balance and all was well at 6 and 4 but then I started my taper to 9mg and began to struggle. Stopped that and remained at 10. Have attempted changing the split to 5 and 5 but am really struggling with stiffness in evening and now through the night. Wake very stiff and today my shoulders feel as if I’ve washed every window inside and out!
I don’t think I understand what is going on. I’m keen to taper and instinctively feel I should stick with my split despite rheumys comments. After all it works for me.....or it was. I feel I’ve lost the balance and it’s all going awry. I continue to have elevated Liver function tests, particularly my GGT, but that has been the case for some years. Does it mean my liver processes the pred differently? Apologies if I’m repeating myself but two years into this and I confuse myself! I’m sure I’ve read somewhere that some people take all their dose at night but why do the doctors not promote that?
Much appreciate any advice or comments. Thanks.
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Lochy
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Ignore her and don't tell her would be my solution!
You are now supposedly at a dose that is less than your body produces in the form of cortisol so the adrenal function is no longer suppressed. A study showed that taking 5mg at night suppressed adrenal function more than 15mg taken at 8.30am. So for patients on a short course of pred it makes a lot of sense to take it once a day in the morning - when they finish the pred, the adrenal function will take up where it left off. We are on pred for so long and at such a high dose that adrenal suppression will happen anyway. Then the criterion must be: what works best for me. And if splitting the dose gives me 24 hours of peace from PMR - who is anyone to complain?
Surely to goodness she'd rather have you on a slightly lower dose that works for you and gives a good quality of life? Or maybe not - it isn't her pain.
Thanks PMRpro. I was thinking the same this morning as I had the wee old lady walk trying to loosen off !
I think I will return to the 6 and 4 split and then keep tapering. I plan to reduce the morning dose and see how it goes, as it worked before when reducing from 15mg. If I ever get to 6mg it might just have to be all at night or things may have changed by then. What is remarkable is how quickly an imbalance makes itself known with pain and stiffness. As you’ve also said before perhaps stick with 0.5mg drops as it gets into the difficult territory below 10.
My GP didn’t like the idea of splitting my dose and instructed me to always take it only in the morning but I wake up at about 2 or 3am all achy so why would it hurt if I took a little at that time?
2am is the time that a study established was the optimum time to take your dose of pred to minimise morning symptoms - and a form of pred you take at night but releases at 2am was developed as a result. Personally I'd take it all - it is in the morning, just don't go into details of WHEN in the morning...
I got an email from my Rumy who said it is fine to split my dose. So my GP isn’t as experienced with this maybe. So being on 4mg it was recommended to take 2 when I get up at 5am then 2 at 5pm. I will be trying that and hopefully feel better.
It is interesting that there are so many different opinions amongst rheumatologists ! Not sure how any of us mere mortals are supposed to work out what is going on.
I’ve returned to my 7/3 split and already this morning I’m feeling significantly better - or less stiff shall we say.
Seeing my GP next week so will be telling him I’ll not be able to follow rheumatologists recommendations. Will see what he says.
Might have to give up on the Scottish rheumatologists and started looking in England or anywhere else!
You don't have a choice in Scotland, you get who you get. Anyone else - you would have to see privately. But don't believe all English rheumies are good either!!!!
I know! Have tried a couple privately but rather disappointed that I don’t come away feeling they have knowledge and understand what we are going through. Always feel I’m better read but never quite able to quote exactly what I’ve read eloquently. And you always get the slightly disapproving look when you mention anything you’ve read/researched online.
I just keep trying to put it all into perspective and tell myself PMR is not life threatening, just difficult to manage and cope with daily. Not sure there is anybody out there who can help apart from all the good people here.
I also remember my first visit to Rheumatology in Western General, Edinburgh and noticing there was no mention of PMR on any notice board/pamphlet stand etc. The nurses weren’t even familiar when I said why I was there. That in itself tells me something.
I know - that blank look even from rheumy nurses concerns me. Of course we are the poor relations in effect - it doesn't do serious joint damage, it doesn't kill and unlike most things they see it tends to go away. I still think the 2 year duration thing comes because they ignore patients still there after 2 years, tell them it is not PMR after all and probably fibromyalgia for which there is little they can offer. And yet it is the most common form of vasculitis and cause of rheumatic illness. I live in a country you wouldn't expect there to be much awareness - I NEVER have to explain what it is. And Italy does a lot of PMR/GCA research.
I've been taking my pred at night, but always using the gastro-coated tablets to delay the release of the drug as long as possible, so it gets into my bloodstream in the early hours when the inflammatory cytokines are released. Doing it this way, my morning stiffness is far less.
I felt the pred wasn't lasting the full 24 hours, so I held back 1mg (uncoated) to take with breakfast, to top me up for the day.
I have had PMR for over three years, and have almost always had to split my dose of prednisolone - with no ill effects.
My reason for splitting is that the effect of the preds wares off after twelve hours or so. The consequence of that was that I was in discomfort in the early hours of the morning if I did not split. I'm now at 5.5mg taken 2.5 in the morning and three before bedtime. It seems to work for me.
Thanks Paddy. Clearly we all absorb our steroids at different rates and need to do what’s best for ourselves. It is always a bit difficult when you don’t get the reassurance from the professionals, but you just need the confidence to believe in yourself.
I'm tapering at 0.5mg every 2 weeks (currently on 16.5mg) and take 5mg (with a banana) at 2am and the balance with breakfast at 9am. Since starting on this system, I wake feeling OK and, if I don't overdo things, get through the day without too much pain and stiffness. A nap in the afternoon helps!!
My gp told me he went to a conference with rheumies who are now recommending split doses for illnesses such as r.a., pmr, etc.. He told me to experiment with split dose, find what works best, and see what happens. Very interesting that these rheumies now saying split dose is best for long term pred users....
I'm tapering down to 7 mg using DSNS after 16 months of PMR and a couple of flare ups when I reduced too quickly as per doctors orders. I take my Pred, last thing at night before getting to bed i.e. 11.30 p.m. and that means I feel O.K. in the morning. I have a short rest most days after lunch and then am reasonably O.K.(just slightly aching) until later in the evening. I found when I took it in the morning it took until lunchtime to work and I didn't feel very well either, so my mornings were completely useless. So much better this way. We all react differently, so do it your way!!!
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