To split or not split 40 mg of prednisone

[casse]

anyone on 40 mg of prednisone and how are you taking it? In one dose morning or splitting doses. Having another flare Dr. bumping me from 30 to 40 wants me to split 20 morning and 20 evening convinced her to go 30 morning and 10 at night. It bothers my sleep when I take it in the evening. Read a couple of things that said it's really better to take it in the morning for less side effects and the adrenaline glands,but the usual reason they split it is it's easier on your stomach. Just wondering how most people on 40 take theirs all at once or split Last year I thought I was taking it all in the morning but can't find those records. Thanks for your info much appreciated. 😉

[PMRpro Ambassador]

The usual reason people split in PMR/GCA is because the antiinflammatory effect isn't lasting the full 24 hours - it varies between 12 and 36 hours depending on the person and if you are a 12 hour person - you'll have problems with returning pain before the next dose.

The adrenal glands argument doesn't really apply for us, especially if you have GCA and are on a high dose. In a study, taking 15mg in the morning suppressed adrenal function less than taking 5mg at night. That might be useful in a short course of low to moderate dose pred but we are taking so much for so long there will be adrenal suppression anyway. So it makes sense to take it the way that works best - and often that allows a lower dose than simply bashing on with a single dose in the morning. You don't necessarily have to leave the second part of the dose to bedtime, taking it about lunchtime may do the trick. You have to experiment a bit.

How have you been reducing? Always 10mg at a time? That is a BIG drop and likely to cause either a flare or steroid withdrawal rheumatism - which manifests as similar symptoms to the disease you are taking it for. Top US experts said several years ago that any reduction should not be more than 10% of the current dose. At 40mg that is already only 4mg, 5mg will usually work though for most people. There's no real hurry - doing 5mg every 2 or 3 weeks is quicker than trying to force 10mg reductions that lead to a flare. And if 5mg still causes problems - try 2.5mg.

Or even perhaps the Dead Slow approach:

healthunlocked.com/pmrgcauk...

which is approved by rheumies.

[casse in reply to PMRpro]

Thanks PMRI've been going as low as 1 mg a month to get from 40 down to 29 and then having my third flare. started on 60 December 2014. Actually got down to 14 January 2015 and wish I would've stayed on 18. As had a big flare then. Rheumatologist, and also will sigh in Philadelphia been suggesting long time now to go on drug sparing agent such as methotrexate or the actemra hospital infusions, which she will discuss with me when she returns from her vacation in Italy. I'm leaning toward the infusions as my insurance will cover it and it's done monthly. Did notice when I took the 10 last night my body felt great this morning no back shoulder neck pain as I also have PMR and had a biopsy done November 2014 for GCA. Thank you again you are always so informative.

[PMRpro Ambassador in reply to casse]

If you have the option of Actemra - I'd be more enthusiastic about that than mtx which isn't proven to do anything much in GCA. If you wait until the beginning of November, the results of the Phase 3 clinical trial with Actemra in GCA will be published with far more evidence of its effect than anything before.

[casse in reply to PMRpro]

Thanks, my eye specialist was the first to suggest that's what I'm leaning toward, if I have to, but just wish could try one more time to wean off. What a difference just those 10 mg did yesterday. Thank three weeks ago when CRP was going up five would have done it. Sad when you know more than the doctors isn't it. Guess we just have to educate them, LOL 😉

[Nethyman in reply to PMRpro]

Hi PMRPro

When I made my post last month about splitting the dose over 24 hours you said at the time 'The recommended dosing is as a single dose and I have never seen any specialist advice about splitting the dose in GCA.'

From the slides of the recent Glasgow GCA presentation, the new draft guidelines will probably recommend a single dose 'conditionally' but I have no information on what 'conditionally' will mean:

"Rec 4 (PICO 6+7): The panel conditionally recommends using a single daily rather than divided daily doses or alternate day doses of oral GCs for treatment of GCA."

Do you have access to any further resource on the subject?

I found that a single dose only lasts for 18-20 hours and then the GCA pain returns. Splitting the dose does work, even taking the second daily dose at lunchtime. Insomnia does not appear to be a big problem, but is better than waking up in pain. This I pointed out to my GP who suggested I should really try to take a single dose at breakfast. This does not work for me, but I did read the risks of taking a later dose and saw that <5mg at night (2015 PMR recommendations page 1802) is unlikely to have any adverse effect, so tried to follow the advice, which was another painful experience

It is really a sad state of affairs when there is no consistency amongst the professionals.

I am reverting back to a split dose, but have insufficient knowledge to make an informed decision on the risks of doing so. Any guidance you can give would be gratefully appreciated.

David

[HeronNS in reply to Nethyman]

My understanding is the reason for a single large dose of pred for GCA is to hit the inflammation good and hard to preserve the eyesight. I imagine that once the acute inflammation has been dealt with the possibility of splitting the dose becomes much less risky and is a lot more comfortable for a lot of people. I'm sure GCA veterans will weigh in on this. Good that you are finding a dose schedule that seems to work well for you.

[PMRpro Ambassador in reply to Nethyman]

The "conditional" is just a term to say this is what we think is best because that's what the collective evidence suggests. I.e. no-one has some up with an incontrovertible study (that has been repeated) tht shows something else is superior. What their evidence base is will only be known to the rest of us when the recommendations are published and I'm not sure when that is to be.

The GCA recommendations will no doubt take the same format as the PMR ones which have already been published:

rheumatology.org/Portals/0/...

and if you have a look there is a section that explains their process and how they come to their decision. It's complex but the basis is the same.

The bit about the less than 5mg at night is based on a Dutch (I think) study where they showed that 15mg in the morning suppressed adrenal function less than 5mg at night. This is of relevance when you are on a short course of low to moderate dose pred for an infection or asthma for example. Or long term 5-10mg. In the case of GCA doses you are on a very high dose, there is going to be adrenal suppression whatever you do. So I believe this means you really need to use the pred optimally for you and if that means splitting the dose to get 24 hour relief, so be it. There is not so much difference taking it in the morning and at lunchtime - there are quite a few patients who don't get round to taking their pred until about 10am after breakfast anyway.

To be honest - the other question anyone should be asking is whether you are on a high enough dose for YOUR level of inflammation. Under normal criteria and a single dose you'd have to say no - but if you spread the same amount over a bit more time and it then works, then it iS enough. Do you see what I'm saying.

Whatever the PMR recommendations say about taking 5mg at night being OK, implying more is not, there are patients who definitely are able to take less by taking it at night as it works better for them. Which surely is the aim? To "reduce the total steroid load" over the course of the disease is their usual mantra. There are people who have always taken their dose at the supposed optimal time in the morning and then struggle to get adrenal function reestablished at low doses and others who have taken it at night who sail down their dose to zero, at whatever age!

[patsy69 in reply to PMRpro]

I understood that the bodies natural cortisol starts to rise in the early hours of the morning , so why are the symptoms of PMR worse first thing in the morning? I could understand it now that I am on steroids because they are probably wearing off. Patsy69

[PMRpro Ambassador in reply to patsy69]

Because every morning your body sheds a new dose of the inflammatory substances at about 4.30am which then start to act in the body, producing inflammation, pain and stiffness. The body's natural cortisol isn't enough to combat it but there are some people who believe there may be a problem with that in the development of PMR in some cases. There is no proof though as yet.

Some people say it isn't necessarily the morning that is worst and for many of us it is all day. That seems to cause confusion amongst doctor who are fixated on "morning stiffness" while the patient doesn't always feel that is worst. There are a lot of different symptoms that they are only now realising are part of PMR - including bladder problems and hand and foot pain.

[patsy69 in reply to PMRpro]

Thanks for that. Also for the Twohig paper which I found very interesting. patsy69

[christine2715]

I have had lots of flares and changed my dose to 7mg in the morning and the rest at 4.30 afternoon. This has been much better for me and has enabled me to get down from 60mg to 22 mg. Also I find I am less hungry in the day time. I generally feel better but I have also stopped leflucimide which I suspect didnt agree with me. i go down only 1 mg at a time and stick to that dose for 4-5 days. Not sure how long you should stay at each dose.

[PMRpro Ambassador in reply to christine2715]

"Not sure how long you should stay at each dose." - the time that works for you. Not anyone else...

[jevuki in reply to PMRpro]

I have begun the dead slow reduction and so far so good. I have a journal and keep detailed notes of this journey. I developed a bakers cyst 5 weeks into starting Pred and then it went away at 20MG got down to 10 then went on a crash reduction and crashed and burned. Back on 20mg but bakers cyst came back at the same time as last time. I am doing the dead slow reduction and limping along (literally) to get this right the second time! I love all the input and sharing it really helps to keep your sanity knowing you are not alone in this process. Bless you all!

[casse in reply to christine2715]

thanks Christine, I'm usually not hungry and have to force myself to eat as I've been losing weight I thought that was part of the GCA but happy not gaining weight as everyone says you usually gain on megadoses of prednisones.

[PMRpro Ambassador in reply to casse]

It is part of GCA and PMR for many people but once you are well managed on pred the inflammation shouldn't lead to weight loss. A few (rather lucky) people do lose weight with pred.

But any unexplained weight loss should be investigated properly - as you cannot be sure it is pred making you lose weight. I also find pred damps my appetite (apparently not enough though!) but if you have ANY other signs or symptoms associated with it it must be taken seriously.

[DavidMF]

I started on 15mgs which removed most pain in 5 hrs. Two weeks on holiday I returned happier but still needing pain relief once a day, especially in the evening, it seemed as though the morning dose had run out. My Dr put me up to 25 and I started 15mg morning & 10mgs evening. This worked out but still a few pains, I was upped to 30mgs the following week. Since then I've been reducing, but kept having some Preds in the evening. I'm now at 12mgs after a flare back in Feb. when I went back to 19mgs. I now take 9mgs morning 3mgs evening. I'm now wondering if I should try the once a day dose. But not wanting to risk it. Seeing Reume today. Hope this helps the splitting did for me.