Changing time of pred: I was diagnosed with PMR... - PMRGCAuk

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Changing time of pred

Molliedog3 profile image
16 Replies

I was diagnosed with PMR early December 2018 and given 15 mg of prednisolone late afternoon. Pharmacist said I could take after food and would be okay in the evening. Due to the pain I took them after evening meal and relief was instant. Since then reduced to 10 mg successfully but now doctor has suggested reducing to 7 mg. After reading posts on here I have only tried to get down to 9 mg but aching arms. Wondered if I would be better taking medication after breakfast but how do I change over from evening to morning? Any help appreciated

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Molliedog3
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16 Replies
Soraya_PMR profile image
Soraya_PMR

My first ever dose was taken in the afternoon. Next day I just took it in the morning.

Later in my journey I was taking my pred at 10pmish, as my dose lowers and I want my adrenals to kick in I decided to return to morning doses, so didn’t take that night, delayed it til the next morning.

You have a better idea than the dr! Never drop more than 10% is the advice. Dropping from 10 to 7 is courting disaster. You might get to 9, but you may have to go via 9.5.

The pains in your arms....days 1,2,3? Or days 6,7,8 and getting worse? First scenario might be steroid withdrawal and should ease up days 3-4 (roughly). PMR resurgence due to too low a dose usually takes a bit longer, and steadily gets worse. If you think it’s withdrawal pains (basically indistinguishable from PMR!) then paracetamol may help.

Marilyn1959 profile image
Marilyn1959

Hi Mollie dog. My Rheumy made me change from evening dose to morning with immediate effect. When I queried it he said don't worry the 'extra' would ensure I had a good day!

Agree that a drop of 10mgs to 7mgs is tantamount to ensuring failure and sure to bring about major problems. I can't help but think your doctor doesn't have a clue about PMR and steroid management. Therefore you might be better off asking for a referral to a Rheumy?

Apply10%rule below 10mgs if you want to give yourself the best chance of a successful taper i.e reduction of 0.5mg steps. Even then it can be a difficult process. You may want to take a look at Dorsetlady's or PMRpro''s suggested dead slow method for tapering which has proven successful with many members.

Take note of Soraya's observations too in that initial pain (days1-3 of a taper) may be steroid withdrawal, but if the pain is still there say day 5 or 6 it is probably PMR. In this case I would advise to go back to the last dose at which you were comfortable then try tapering again at a later date. Tapering is not always straight forward, nor is it a race. You will learn to listen and respond to your own body, rather than trying to follow a ridiculous tapering programme that is unachievable.

HamishPMR profile image
HamishPMR

Take your pred as early as possible in the morning. Don't wait until breakfast time.

ALeCount profile image
ALeCount in reply to HamishPMR

Can you tell me why?

HamishPMR profile image
HamishPMR

Best I can do is reprint some notes that I have. As a retired pharmacist I only take information from reliable web sites like the UK NICE site which is used by all GPs, so....

"The reason for taking the pred as early as possible in the morning is to come as close as possible to when the body naturally secretes a corticosteroid, cortisol, which is shortly before you wake, and this, it is felt, reduces the overall rate of side effects. Also the substances that cause the inflammation, cytokines, are shed in the body about 4.30am and taking the prednisolone as soon as possible afterwards hopefully controls the inflammation before it really takes hold."

I think there is a prednisolone sustained release tablet which you take before bed and the drug kicks in 6 hours later but, it is not available on the NHS.

PMRpro profile image
PMRproAmbassador in reply to HamishPMR

It is not a sustained relase tablet - it is a delayed release tablet with a very different mechanism. You take it at 10pm either within 3 hours of dinner or with a substantial snack (bread and cheese/ham) which creates the correct conditions for the outer coating to disintegrate after 4 hours and release the entire dose at once, still in the stomach. It is exactly the same as taking it at 2am but without waking up to do so.

Ronnie101 profile image
Ronnie101

Coincidentally, I was going to write a post about this very subject to share my experience. I was diagnosed GCA in early 2015 but in 2018 I developed symptoms of PMR. I was still "bouncing" around 10 mg pred, unable to get it lower despite trying super slow methods of reduction. Early this year I developed severe pains in the shoulders, neck and back of head, and I pushed the dose back up to 13 mg thinking it was a flare. Didn't seem to make a difference, so i was contemplating raising the dose again, but I thought I would try and split the dose and change the timing. Bingo! It worked and I've now gone back to 10 mg.

I take gastro resistant pred due to reflux issues, so I've traditionally taken it late in the evening. I started taking it at 5 pm instead, and my symptoms improved considerably. As a further trial I split it and now take 5 mg at 12 noon and 5 mg at 5 pm. My symptoms have virtually gone now.

If I were you I would try taking your evening dose as normal, then the same dose at mid day the next day. You can then adjust it slightly earlier on subsequent days.

PMRpro profile image
PMRproAmbassador

I would take the evening dose and then the next morning take the same dose. The extra for one day won't hurt (you'll have a good day as a result probably).

Molliedog3 profile image
Molliedog3 in reply to PMRpro

Ooh might try that at weekend, thank you

Hi Mollydog

Whatever time you take your Pred (although it’s recommended you take it before 9am each morning) dropping from 10-7mg is asking for trouble.

It is well accepted that we should drop by no more than 10% so yes go from 10mg to 9mg & from there on in, by 0.5mg.

My Consultant always advocated this method even when l was on Methotrexate as a Steroid Sparer; also you could consider one of the Slow Tapers to facilitate you reducing.

Best Wishes

MrsN

Stifffingers profile image
Stifffingers

You seem to have similar pathway as myself.I got diagnosed Sept 2018. Hospital put me on 20 mg. 2 Weeks later outpatients appt, i was told to reduce from 20, to15 , to 10, to 5 over 4 weeks. OMG..... did i end up suffering. Was put back to 15mg baby another Rumy.

recently he reduced me down to 12.5 by taking 15 alternate days to 10 the next. Then after 2 weeks i started on 10 mg a day. For the first two days i suffered, but it seems to have balanced out now. Stiff fingers sometimes , but i guess i,m doing better than most of what i read.

by the way, i take mine in the morning with food. after 30 mins later after taking the Omerprazole which i take as i awaken.

wish you well.

OutdoorsyGal profile image
OutdoorsyGal

My start dose for PMR was 15mg, and I asked my MD (internist) if I should separate it and take 10 at night and 5 in the am. She said prednisone stays in your body for more than 24 hours, so that is unnecessary.

PMRpro profile image
PMRproAmbassador in reply to OutdoorsyGal

And what exactly did she mean by that?

The substance itself is eliminated from the body in 4 or 5 half lives. The half life of prednisone is 1 hour, that of prednisolone 2-3 hours. So prednisone is entirely eliminated from the body in 5 or 6 hours, prednisolone in under 15 hours at most. So, no, not in the body for "more than 24 hours".

What lasts longer in the body is the EFFECT - the antiinflammatory effect lasts for 12-36 hours depending on the person. So it depends which end of the spectrum you are. At the 12 hour end, symptoms will start to return long before the next daily dose would be due. Not very many people are at towards the 36 hour end which is why alternate day dosing doesn't work well in PMR. But most people do manage pretty well on a single dose per day which makes it easy - the fewer times per day a medication must be taken, the better the patient compliance. Most people hate multiple doses and tend to forget them - enough people manage to forget a single dose now and again!!

OutdoorsyGal profile image
OutdoorsyGal in reply to PMRpro

I guess she meant the effect.

I had no breakthrough pain or stiffness at any time during my course of prednisone, short though it was, by this forum’s standards.

Molliedog3 profile image
Molliedog3

Thank you all for your helpful advice. My plan is now to swop dose to morning and do the very slow taper, 9 mg on two separate days and 10 mg rest of week, then 9 mg on three separate days etc. Fingers crossed 🤞

tina-shelley profile image
tina-shelley

Hello Molliedog, I am one of the lucky ones who is now 15 months into zero pred after a PMR journey of 4 plus years. I was very lucky in that my rheumatologist was happy for me to follow the dead slow and almost stop method of reduction. Sorry to say but morning, evening whatever is not the issue here, the issue is your rapid reduction. I was on 15mgs for 6 weeks followed by 12.5mgs for 6 weeks followed by 6 months of 10mgs. I appreciate that many rheumatologists don’t keep their patients on 10mgs for quite that long but it was following my reduction from 10mgs to 9mgs that I experienced my first flare and following the suggestion of the dead slow reduction method on the forum I tried it. On doses less than 10mgs you really need to take things slowly and gently. I wouldn’t even reduce by 1mg met alone 3mgs. I do hope your medical practitioner isn’t one that thinks that you should be off the pred quickly. They need reminding that the condition controls us and that no matter how much we’d like to we can’t control the condition. If you reduce too quickly there’s every chance you’ll experience flares and that will simply result in constantly upping your dose making it harder to to keep the inflammation under control.

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