I am getting a little ahead of myself here, have been on steroids 2 weeks, advised to split dose one week ago with very good results - almost pain-free, feeling well. On 10mg am and pm. My excellent rheumy says continue for another 2 weeks, then commence taper (will see him for details in 2 weeks). However he doesn’t usually have patients on split dose and is unsure how best to do this. I’ve seen posts re tapering and found one a few days ago featuring split dose tapering but can’t find it now, I was going to take it with me to show him. Any advice? I would rather stay on pred for longer and taper v slowly as I do not want to keep going up and down with flares etc, but he’s more bothered about long-term side-effects. By the way I have found this site so helpful, so pleased I found it so early in my PMR journey. PS how do I add a photo to my profile?
Worried about how to taper split dose: I am getting... - PMRGCAuk
Worried about how to taper split dose
Since you have split it 10 and 10, I would taper first on the second dose, 1mg at a time, until you notice it in the morning which tells you that is the limit for extending the effect to 24 hours. Then I would maintain the evening dose where it is and taper the morning dose.
However - that is just a start, Everyone is different and you may find that doesn't work well for you and you need some tinkering.
Thank you, I just need an idea of where to start. He did say his inclination was to start with the evening dose but I think he was going to look at it over the next couple of weeks. I thought it would be helpful if I myself had an idea of what has worked for others so I can discuss it properly with him. This is very helpful.
Same Rheumy who out you on split taoer doesn’t know how to taper you? Seems a bit odd.
Either taper each amount the same, or taper morning 1st time, evening 2nd time around- and so on… but as PMRpro says it may need tinkering in future.
As for adding photo -
Go to your profile, select Update and then + Avatar and/or +Banner whichever you want to change and select your own photo from device.
Yes I know, he’s been very decisive so far and immediately said I’d need to split the dose when I told him I still had night/morning pain, so I was a bit surprised - I think it’s just he hasn’t had a split before (seems odd in itself, he’s very experienced) and hadn’t actually thought much about it. He thought he’d start with the evening dose as obviously they prefer you to just have am dosing, I just wanted others viewpoints. Thank you, and also for the photo tip - that’s really helpful.
Well I guess because you were on 20mg he may have expected a better initial response, but 2 weeks isn’t very long in the great scheme of things. So if he’d given it a bit more time you may have been okay on a single morning dose, which is the usual recommendation, but it is what it is. And if it works for you, then that’s the aim of the game.
The more usual split is 2/3 in the morning and then the rest sufficiently later in the day to take the effect through to the next morning and the next dose. Often lunchtime works so you can take the pred with food and it is well out of your system before bed with fewer sleep implications.
Yes I think this is why he wants to start reducing the evening dose, so there are fewer effects overnight although it doesn’t really seem to be affecting my sleep much, fortunately. I’ll see what he says in a couple of weeks time. Hopefully he’ll suggest reducing by 1-2 mgs only, I’m concerned about reducing too quickly. But at least I feel I can discuss it sensibly having read everything on here 🙂
He may not have suggested a split dose before, as I’m guessing a lot of medics will be like my gp. When I talked to her about splitting, she said it was best, if I could, to take the pred dose all at once, because ‘it’s a bit like antibiotics in that you have to give the PMR a big hit’. She also said that she’d be more in favour of splitting the dose when I’m on a much lower dose (I’m on 15mg daily), because the PMR is much more under control by then.
All the best.
But the pred has no effect on the actual disease process - an underlying autoimmune process that leads to inflammation being created. It isn't "controlling" that at all. The normal course of events is that over time the activity of the autoimmune disorder slows down, less inflammation is created each day and less pred is needed to mop it up. The pred isn't controlling the disease, it is controlling symptoms. And it might do that with a single dose - but the antiinflammatory action lasts 12 to 36 hours depending on the person - if you are down at the 12 hour end, the symptoms will be back before the next daily dose is due and splitting makes more sense.
Initially there is some sense in the "one big hit" in that it clears out accumulated inflammation in the various tissues - that's why people whose doctors give them a GCA-level dose show a faster response but one of the criteria that has been used for a PMR diagnosis is a speedy response to a moderate dose of pred and using a high dose masks some of the evidence the moderate dose supplies. For example, it is subtle and often over months, but PMR tends to respond more obviously to, say, 20mg pred than an inflammatory arthritis will and the response is more sustained (providing you don't immediately go back to your normal activity level), in inflammatory arthitis the symptoms may slowly creep up again and/or tapering is problematic.
And if she is likening it to abx - you only have the one big hit usually, maybe 2, then you take the rest of the course at a lower dose over several days. In fact, there is only one antibiotic where it is recommended and that is azithromycin. There it is a the "loading dose" to get to the minimum therapeutic level in blood quickly. It isn't required with most abx.
This is really helpful PMRpro, explains why it is that the single dose wasn’t helping for the full 24 hours - I was taking it 8-9 am and in pain again around 3am, so can I assume that for me the anti-inflammatory action lasts about 19 hours? It also seemed to take at least 3 hours for the full dose to kick in after taking in the morning, although I’ve seen it’s in the bloodstream after an hour…
It is if it is prednisolone (prednisone takes longer as it must be processed by the liver - but the longer after 4am you take the pred, the more inflammation has been created in the meantime and so it takes longer to clear out.
Thank you, it’s surprising how much variation there is in doctor’s approaches but I guess this is one of those conditions where little research has been done into best treatment regimes etc so it’s a bit of a free for all…
interesting, thanks, PMR pro. She might have said/meant the inflammation rather than the disease. I understand about the steroids reducing symptoms.
Hi, I have split my dose since early on in this PMR journey after reading about it here and hoping it would make it easier to get moving in the morning, which it does. But I never took more than 1/3rd of the daily dose at bedtime and continued to taper that dose, leaving the morning dose constant to be able to deal with the demands of the day.
It will probably be a while yet to find out what your body needs to address the PMR and you may have a long journey ahead of juggling your pred to achieve a good quality of life. And of course you should not expect to feel « cured » and able to carry on the activities you enjoyed before PMR in the same way. It’s quite probable that PMR has come into your life to remind you to take care of yourself better, and we have all had to learn the hard way what that means and what part the pred plays in going forward. Best wishes, Chrissie
I think the relief of pain on starting pred made me think it would be all plain sailing but obviously that was rather naive! I’m sure I have plenty more to learn about it all but this site and all you posters are amazingly helpful. And your comment about activity is very timely, usually do resistance training at the gym etc, obviously hadn’t been doing that but went back last week and did very little with very light weights but still found I had long lasting DOMS, so for the time being I will be restricting my activity to walking, gentle pilates and stretch classes - hopefully this’ll be ok but am very much listening to my body!
Try it WITHOUT weights and just a single set to start with, Assess the next day - no pain and you can do it again. what is the smallest weight you can add?
Depends on which machine/ equipment, but usually 2K, I think there are 1K dumbbells somewhere…but your idea of just using body weight and a single set is a good one…I was thinking of maybe trying a few lower body exercises too as my pain has mostly been shoulders. I definitely have to rein myself in though, I’m a bit eager…
That's what I was thinking and that is a big step up. For dumbbells for bicep curls, I usually suggest 2x500ml plastic water bottles and just put 100ml in each for the first try, If that is OK, try 200ml and so on, And only ever 1 set until you know you are OK, and don't add a whole new set at a time, half at a time is better.
I think the relief of pain on starting pred made me think it would be all plain sailing but obviously that was rather naive! I’m sure I have plenty more to learn about it
This might help -
I don’t want to alarm you but my PMR started over seven years ago and I thought my outdoor life with horses was at an end. Sheer determination and a carefully managed taper gave me that life back but had I gone with what the doctor said I would have been ploughing through treacle after six months. There is far better lived experience on this forum and tremendous support through a difficult time.
I finally chose to give up horses at the end of last year and really miss the outdoor life and daily toil. Please don’t think your life and exercise regime has to change completely, it’s just a case of understanding your body and being kind to yourself. Chrissie
I’m not yet sure how things are going to pan out re on-going management, I’m seeing a private rheumatologist simply because the NHS wait was 11-12 months but I will need to limit that due to finances. My rheumy seems relaxed about me self-managing up to a point (not yet of course, much too soon) and I’m talking to the GP this coming week so I’ll get her take on it, but I’d much rather go slow rather than increase the risk of flares. Re activity, it’s very hard but I’m trying to tell myself I just have to cool everything down for a few months at least - trouble is at 74 if I lose my fitness will I ever get it back again? I know things could be much worse but still…It must have been so hard to give up your horses, my daughter has 3 (lives in N Carolina) and it would break her heart to have to lose them..
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