Hi, maybe a stupid question. I am now on a reduced dose of 15mg pred. Due to be reduced to 10mg tomorrow. Is it possible to take 5mg in the and 5mg in evening ? And would this help me sleep ? Thanks
Splitting Pred dose: Hi, maybe a stupid question. I... - PMRGCAuk
Splitting Pred dose
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Worthy10
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Hi, I'm currently on 8mg and take 5mg after breakfast and 3mg in the evening which works great for me so yes try it
I was told to reduce mine by 1mg each month.
DorsetLadyPMRGCAuk volunteer
It might, but a reduction from 15mg to 10mg is big step.
You say recently diagnosed in your bio -but it may not be as easy as you or your doctor thinks so maybe have a read of this -and a bit more info about when diagnosed and tapering schedule etc would be good -
healthunlocked.com/pmrgcauk...
Hi DL, thanks for the advice. Diagnosed 6 weeks ago. Initially on 20mg pred for 4 weeks. From the start have always had the 4am wake up call. Today is my last day of 15mg. My GP has asked to see me after 4 weeks of being on 10mg. So, not sure how I will feel in the coming week 😩
Thanks, might be better if you try a 2.5mg drop [halve a 5mg tablet] initially... rather than go straight to 10mg. Men do usually manage get through PMR better than ladies, but it's a big ask...
the 4am call is explained in my link...
PMRproAmbassador
I would be very reluctant to drop 15 to 10mg in one step this early in the game - you aren't aiming relentlessly for zero, you are titrating the dose to find the lowest effective dose. It might work but that is a big jump and you could need 14mg at present or 11mg and either way, 10mg is too low!
5+5 might work but more important is that the morning dose of new inflammation is all dealt with with the morning dose - the bulk of inflammatory substances is shed in the early morning soon after 4am and must be either prevented from causing any inflammation in the first place or that inflammation mopped as as soon as possible to give relief from the symptoms. It may be that 5mg isn't enough to do that and there is relatively little need for the later dose and its antiinflammatory effect will be minimal by the morning. What a split dose can achieve is extending the effect to a good 24 hours until the next daily dose is required - but many patients don't need that as pred lasts for 24 hours or more for them. An evening dose of pred also tends to have more effect on sleep patterns than the same amount taken in the morning which will be out of your system by late evening.
If you DO drop to 10mg and symptoms return - DON'T wait 4 weeks to present to your GP because by then you could be in a right going flare and it will be much harder to deal with than if you had abandoned the drop immediately and then gone more slowly. Top experts in tapering/titration of doses recommend not more than 10% of the current dose. You are looking at 33% with 15 to 10mg.
Hi, thanks for the quick reply. I thought it was quite a big reduction, but didn’t have anything to gauge it against apart from posts on here, would you say I should contact my GP and suggest a 2mg reduction if possible over the next four weeks or see how it goes in the first week of 10mg 🤷🏻♂️
I'd ask to try 2.5mg first - see what he says. The 5mg drops work OK for short term use of pred but few GPs have much experience of the long term use that is needed in PMR. Some doctors get a bit stroppy about patient-led requests - what's yours like?
To be honest he has been great. He first flagged the PMR I think through my blood tests. Seen him last Thursday, his main concern was my health/pain to be fair. Also, gave me two further scripts, Calcichew 1 twice a bay and Alendronic acid 70mg once a week. So I think he would be open to talking to me in needed.
Don't start the AA until you have had a full dental checkup and personally I think a dexascan is essential - you might not need it, I didn't then and still didn't after 11 years of pred. And it always helps to start new drugs one at a time then you know what each might be doing.
Is a dexascan something a GP would know about or request ? I was told initially that a rheumatologist would contact me, but heard anything? Should I chase this up with my GP ?
GPs can request them - though they have a habit of passing the buck. Rheumatology referrals are not the speediest, especially for PMR that responded as expected to pred, and an even greater problem at present as you might expect. Where in the UK are you? Some places are better than others.
I live in North Wales. An emergency Rheumy appointment took 5 months and wasn't much use. Dexascan over a year. Go private for the scan, it cost me £120 from memory and it had more detail than the NHS one I subsequently had. Go online. There will be somewhere near you that does them.
My GP requested the second Dexa scan I have had 3 years apart. The appointment actually came through quite quickly ( less than 4 weeks ). I didn’t need AA 3 years ago and I still don’t now. Prescribing it for PMR is just on their tick list but why take another medicine if it’s not necessary ?
It takes time from 15mg I would go 15- 14 for one mouth then 14 for a mouth and so on until you get to 5mg stay on 5mg for 2 mouth then tapper down 5mg-4mg and so on.
Great news 😩 may try paying to see one then 😩 are there any suggestions about easing symptoms apart from pred ? Tiger balm, phiten titanium patches ? Supplements apart from calcium ?
I had PMR without any pred for 5 years. I did aquafit every day Mon-Friday and having done that I could move enough to do Pilates and Iyenghar yoga each once a week (I had an off-peak gym membership so it was affordable. It helps the stiffness so part of the pain but not entirely. How free from pain were you after 4 weeks at 20mg? That is your guide - you should never have more pain at the end of a taper step than at the start,
Heat often helps, we used to suggest using an electric blanket BEFORE getting out of bed and then stretching in a hot shower, But nothing in the way of supplements really achieves a lot.
If you do go privately - try posting asking for recommendations, saying how far you are willing to travel because it is worth travelling for the right private rheumy. All private ones are also NHS doctors but that doesn't mean they are any better either way!
I have been searching and searching for someone to comment on applying heat. This is the first time I've seen a comment about heat. Since PMR is such a unique disease, it's hard to know if heat is a good thing. Many good articles say the PMR affects the capillaries. The biology seems different than other kinds of pain. I have used heat at times and it does feel good. Of course, heat alone is not the answer. I take Prednisone and that surely seems to be the answer!
Depends on the person but the muscle pain problem is most likely contributed to by poor blood perfusion - warmth leads to vasodilation, better perfusion and less pain. I personally found that pre-pred the best part of the day was after a glass of wine with dinner ...
Really only Pred will work on inflammation relating to PMR…. any other OTC ‘remedy” is waste of money.. although some may help specific side effects of PMR and/or Pred … magnesium for example if you suffer from cramps. But best to ask if and when something arises.
Calcium supplements are for bone health, and many taken VitK2 mk7 [widely available] to help direct the calcium to the bones rather than the arteries….
Gentle/moderate exercise will help -
healthunlocked.com/pmrgcauk...
Is there different grade VitK2 mk7 ? If so does anyone recommend a supplier ?
I think Vitamin K2 MK7 dosage recommendation is 150 to 180 µg (or mcg) per day.
HeronNS is our expert in vitamins/bone health so sure she will be along shortly to advise… but as she lives in Canada she may not be able to recommend brands.
I use Zipvit (online) - it’s only 100mcg per tablet -but as I’m no long on steroids think it probably enough for me.
Thank you DL ordered the VitK7 from them 👍
There are a few places in London where you can use self-referral to ask for a DEXA. It probably costs around £80 now (last time I looked, a couple of years ago it was £65). There may be a similar option closer to you. I would hurry though. Sometimes Prednisolone does not affect the bones, but it is apparently likely to be more problematic in the early stages of treatment. Remember that you can have 2.5 mg tablets which can be helpful when tapering.
I found the prescription calcium irritating on the urethra, so I am using calcium citrate instead. Make sure you don't take calcium together with Prednisolone (I mean, not at the same time).
Good luck with the taper. Like the others said, I suspect thst 5 mg drop may be too much. I struggled with (but managed) 15 mg to 12.5 mg, but 12.5 mg to 10 mg was very easy. We are all different and it may be worth asking your GP what he thinks (I had 3 weeks on 15 mg, 3 weeks on 12.5 mg and 4 weeks on 10 mg).
Hi, why wouldn’t you recommend pred and calcium ? I was prescribed the calcium by my GP ?
Sorry, perhaps I was not clear; don't take it at the same time.
Violet, that is very important information to put out there about the calcium. If you take calcium and prednisone at the same time, the calcium forms a coating around the prednisone tablets and there is less absorption. Calcium is important but should be taken at a different time, so that prednisone can be fully absorbed. My thanks to everyone who shares their experience on this forum.
Hi Worthy 10. I had a dexa scan at Aberystwyth when I lived in West Wales. It confirmed that I didn’t need the Alendronic Acid which the GP prescribed and more recent bone density scan 4 years later confirmed the same. The calcium supplement irritated my bladder and gave me frequent UTI s. So I take a Vit K2 and D3 supplément. The GP has now cancelled my repeat for Calcichew.
Your doctors response seems to be standard response to a PMR diagnosis, and in my case the taper was too rapid so I started splitting the dose by cutting the 5mg tablets in half with a knife (then bought a pill cutter) and taking 1/4 of the daily dose at bedtime.
I was never referred to a Rheumatologist in Wales and didn’t worry about it, especially reading of the very mixed approach some of the forum members have experienced. But Now in East Sussex the local NHS Rheumatologist has queried that I ever had PMR to start with so personally I think it wise to see a Rheumatologist one way or another to confirm your GPs diagnosis and advice. Best wishes, Chrissie
So many smart replies! The real experts. Yes, don't ever drop 5mg at once. I'm trying to get down to 15 from 20 and taking at least a month. I use 5 and 1 mg pills, and cut the little ones into crumbs. This week I'm alternating 17, mg and (about)16 3/4, two days on 17, next week I will TRY, a 16 1/4 day, or two, depending on how it goes. I do split into 3 daily doses, more in the morning and less at night. I had to experiment.
I also taper by taking the meds later, like 7am, 3pm and 9pm instead of 6, 12 and 6. This is almost maths calculus, lol, but more of an art than a science. Let your body tell you!
My doctor isn't very experienced with PMR, and a rheumatologist may be in the works, at some point, but the last thing I want is a big flare , which could activate GCA. I slept through a larger night dose and woke up with raging pain. I do not want to go back up.
I'm new to PMR, age 71, in the US and my DNA is Welch, Viking and Scottish. We inherit randomly from our parents, who were more Brit, Irish etc than I actually got.
Were you told to take pred 6/12/6? There is no real justification for doing so. The bulk of the inflammatory shedding of IL-6 occurs in the early morning at about 4am-ish. The evening bit of IL-6 is physiological and serves a purpose. The ideal time to take pred is 2-3am so it is in place to manage the early morning inflammation and mostly in a single dose. If you don't want to wake in the middle of the night, taking the pred as early in the morning as possible is next best. Taking it all at once like that has the greatest effect on the inflammation and then lasts for most people until the next morning - that is why pred is used rather than hydrocortisone. For a few taking the bulk in the morning and the rest later in the day may be required to get the effect to last for 24 hours.
So is your pred dose supposed to give you 24 hour pain relief ?
It should but not always. The antiinflammatory effect of pred lasts 12-36 hours - if you are at the lower end of that range you may find symptoms returning before the next daily dose is due. Then a 2/3 and 1/3 split may work better for you to extend the relief to 24 hours but everyone is a bit different. It is also the reason that alternate day dosing (taking double the dose one day and none the next) which is said to minimise the adrenal suppressive effect of corticosteroids isn't recommended for PMR and absolutely not for GCA.
I tried a single 20 mg in the morning at first and woke up in raging pain at 2am, nauseated, couldn't get up, then fainted dead away from the pain on the carpet, trying to make it to the bathroom. So not doing that again!
I live with a primary care doctor with 40 years experience and my daughter is also an internist/infectious disease doc, so I have lots of input aside from my "official" new physician. I've been on my own for many years as we try to stay outside the system entirely, like no medical records. Under the table.
But as this started in Feb. I had to literally diagnose myself, and start small doses of prednisone, which we had on hand, as I couldn't get an appointment, being on Medicare, no one wants us. I thought I needed an orthopedist for a month and would be facing two hip replacements. I had to travel mid March, and so glad I brought along extra pred because I figured out what this was when my perfect left shoulder jumped into the chorus!
The half life of pred is fairly short, so I'm finding that this works for me as I taper as carefully as I can. I do not want to wake up the sleeping giant again.
I had lupus for 7 years and took both prednisone, every other day, and Plaquenil, so I added Plaquenil to my regimen as we also have it on hand. I tried reducing that also and flared, so I'll take 400 for three months as it builds up. Safer than methotrexate and a steroid sparer.
Strange - we have several members with good care on Medicare.
The half life of pred is not THAT short - 3 to 4 hours which is how single daily dosing works for most patients, all out of the system in about 22 hours but the antiinflammatory effect is ideal for 1x daily, Hydrocortisone is far shorter.
Hydroxychloroquine is a steroid sparer - in asthma. There isn't that much evidence it works well in PMR although there is one member on the forum who has had very good results with hydroxychloroquine.
I can get good care too as they know I'm a long time local doctor's wife, but we have an abnormally high number of low income Medicare patients here, being in a rare snow free area with low cost of living. Very few people here have great insurance as there are few good jobs.
"The bulk of the inflammatory shedding of IL-6 occurs in the early morning at about 4am-ish. " Very interesting. I wonder if this depends on one's circadian rhythm.
"The bulk of the inflammatory shedding of IL-6 occurs in the early morning at about 4am-ish. " I am wondering if this applies to every person because our schedules -- time of sleep -- can be very different. For example, I am a night owl. Is the time of my shedding of IL-6 the same as an early riser? I believe my problem is that I (rightly or wrongly) am trying to tie the shedding of IL-6 to one's circadian rhythm.
It does adjust to your personal sleeping habits - but for the vast majority it peaks at about 5am. If you have different regular sleep/wake times then the circadian rhythm will change to fit - but it must be regular over a period pf probably a couple of weels.
I have been splitting the dose for years - half in the morning and half at night - best thing I ever did as it keeps me pain free all day and night - no trouble sleeping at all.
I have been on PREDNISONE since 9/21 and during tapering my Dr split my dosage 5MG to 2mg AM and 3MG PM as I tapered lower and after a satisfactory morning Cortisol Test all Prednisone was moved to PM I’m currently at 1.5 MG Good Luck with your journey
I was instructed to drop from 15mg down to 10mg by my (former, first) rheumy and flared and have to go back up to 15mg for 6 weeks to clear it out. I wouldn’t recommend such a big drop, perhaps try 2.5mg drop instead.
I also started splitting my dose because it wasn’t lasting the full 24 hours and I had stiffness in the morning. I consulted with my GP before starting. I now take 2/3 of my dose at 11pm in enteric capsules so it’s on-boarded by 2am. I take the other 1/3 of my dose at 11am. Worked a charm!
I was also struggling with tapering from 10mg , still feeling very stiff and achy in the mornings. Then I read about splitting the dose to 5mg before bed and 5mg in the morning . What a revelation !!! Such an improvement , I sleep better, not nearly as stiff in the mornings I can actually think about doing things earlier in the day, not leaving everything till the afternoons. Feeling more alert and brighter in myself ,in the pipeline (UK) for a first Rheumatology appointment after a diagnosis 5 years ago. Good Luck everyone with this long and arduous journey !
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