Advice for times to take prednisone

[Maggie69]

HELP and advice greatly appreciated I have managed to reduce down to 10mgs of prednisone daily (was to taper down to 9mg on Sunday but In too much pain)which I take at 6 pm every nite while getting ready for work(as I work night duty as a nurse at my local hospital) my problem is when I get out of bed I am in such pain 😢then take my prednisone x could someone please advise if I should split my dose and if so what times please x TIA 😘😘😘

[yorkieme]

Hi Maggie,I can only base my comment on my experience and how it affected me. Others with more knowledge will no doubt be able to help more.

I started Pred' a year ago for PMR and took the full dose in one hit,normally 7 am,the problem was that I seemed to wake up most mornings between 3 and 4am in absolute agony and remained there until the next dose kicked in.

One day I read on this forum that someone split their dose so I gave it a shot, half at 7 am and the other half at 5pm,I have never looked back other than once when the consultant asked me to go back to the full dose in one hit for test purposes but the same thing happened ........ early morning agony.

I am on 10mg/day waiting to reduce further so good luck. Not sure full time working is a good idea but we are all different so again good luck with that.In many cases,not all we have had to modify physical activity in order to allow the meds' to do their job and our body to benefit as much as possible.

Kind regards.

[Maggie69 in reply to yorkieme]

Thank you so very much for replying to me x I will definitely try this x I have put on so much weight as I can't control my appetite curse this illness 👊👊👊👊😘😘😘😘

[PMRpro Ambassador in reply to Maggie69]

Try cutting carbs drastically - especially processed carbs, bread and baked goods, pasta, rice and potatoes above all. It helps to reduce the swings in blood sugar levels which is what causes the desperate hunger. It also helps reduce the risk of steroid-induced diabetes.

This website is a good place to start to learn which is better and what isn't so good to eat with pictures for veggies and fruit that are easy to remember.

dietdoctor.com/

[DorsetLady PMRGCAuk volunteer in reply to Maggie69]

Normal recommendation to split is 2/3rd in the morning, 1/3rd at night - but as you are workings nights - you might need to juggle a bit to find what suits you best.

And TBH I wouldn’t be in any rush to decrease - give yourself a few more weeks at 10mg - and then maybe try 0.5mg drop and/or a slower taper - this is just one variation - there are more - healthunlocked.com/pmrgcauk...

[Maggie69 in reply to DorsetLady]

Thank you xxxx I’m just wondering about what time should I do 2/3 at 6pm and. Last 3rd approximately 11am x

[DorsetLady PMRGCAuk volunteer in reply to Maggie69]

A higher dose would seem sensible before you start your night shift, and then hopefully the morning one will keep things ticking over for when you sleep and then get up later in the day.

But you may have to experiment a bit.

[Siral in reply to Maggie69]

A good website, run by a busy mum who has easy but delicious recipes and good general weight loss ideas and tips is ‘Ditch the Carbs’

[Maggie69 in reply to Siral]

Thank you xxxx

[PMRpro Ambassador]

If you were that much pain you shouldn't even have been thinking of reducing further - is that just the straight out of bed pain or longer than that?

[Maggie69 in reply to PMRpro]

Hi it was the rheumatologist told me to reduce by 1mg per month by her tapering I should b at 5 mgs but I had to increase back to 10 becau. Of pains x

[piglette in reply to Maggie69]

I really get so angry with some medics who seem to have not much of a clue about the effect of steroids and the pain of PMR. An Australian rheumie I met said he loved coming across PMR as it was so easy to manage! I have learnt from bitter experience, NEVER try and reduce if you are in pain, it will only get worse, PMR will always win.

[SnazzyD in reply to Maggie69]

I think that with your work life, especially night shifts that are shown to be very physically stressful even if you like them, allowances need to be made in the reduction schedule. To reduce while you are in pain whilst working like this is risky. What you don’t want is to keep being put up to deal with flares or having a constant level of inflammation that might risk worse secondary effects.

[Maggie69 in reply to PMRpro]

Hi was going with what I was told to do🙈🙈my pain worse when I get up and lasts for a few hours x

[humlies in reply to PMRpro]

Presumably one can't hope to be pain free when reducing the pred? I am down to 9mg from a start of 15 in August, and although I am better, I still feel stiff and sore.

[PMRpro Ambassador in reply to humlies]

Were you pain-free at 15mg? Is the pain and stiffness now worse than then?

[humlies in reply to PMRpro]

Hello again. I had 2 glorious days of being pain free at the start of the medication, but then everything came crashing back. For the last month I have been less up and down, and feeling rather better, but never pain free. As recommended by many of you, I am going to start taking part of my dose at night and see whether I then sleep for a bit longer.Both my doctor and the lovely rheumatologist I went to see thought it was right to start at 15mg pred. - even though the accompanying leaflet recommends a starting dose of 20 - 40mg! Mysterious.

[PMRpro Ambassador in reply to humlies]

Did you go back to normal activity levels on the second day of that blessed relief? That is the most common mistake - trying to do too much because you feel so well again. You have to adjust to a new normal - boring but the reality. You would probably have been better starting at 20mg, some people need the extra bit, 40mg is for GCA. How long did you stay at 15mg?

You should have stayed on that starting dose for at least a month until you were reasonably symptom-free - some people are never totally free of symptoms but you should be more than 70% better than without pred.

[humlies in reply to PMRpro]

Yes, I probably went back to the old life. Glad I shouldn't have been on 40mg - though the rheumatologist wants me to have a PET scan for possible GCA. I was on 15 mg for about 3 weeks. I will bear your 70% better comment as a goal to aim for. Thank you so much!

[Maggie69]

Thank you soo much everyone I had never even thought about splitting my dose til I read it here.xxx

[SheffieldJane in reply to Maggie69]

Thank you for being a night nurse angel, 🙏

[Maggie69 in reply to SheffieldJane]

😘😘😘

[diana1998 in reply to Maggie69]

Splitting very successful for me 2/3rd 1/3rd. Juggle around to find which times work best for you. And stay on 10mg till pain under control. I could only reduce half mg per month under 10. Much more successful to go slowly whatever the doc says.

[Dambusters]

I take my 10mg at night, with my evening meal, to waken pain-free in the morning.

Luckily I have not had any real problems sleeping. I get into a warm bed.

When I tried to reduce from 10 to 9 it didn't work. I am back on 10mg for a month and been told to then reduce by half mg to 9.5

I have a doctor whose mum has PMR so she understands what we go through.

Stay safe.

[Exflex]

I’ve been on Pred for 12 months now and just (just!) about ok’ish on 10.5mg. I was waking with arm / shoulder pain and dosing myself with paracetamol and ibuprofen within the prescribed limits on the leaflets. I tried splitting Pred 50/50 at 8am and 6pm but felt like I had flu symptoms after an afternoon‘s walk. I modified to 7.5mg mornings and 3mg at 6 pm but still felt unwell with the flu type symptoms (I do not have flu, no temperature etc and it clears with Pred), so I’m back to full dose once a day taken in the morning.

[Knitwit2020]

Hi Maggie..isnt it bizarre to think how many patients we may have nursed in our careers and yet feel so lost in dealing with a disease that is personally affecting us. Our training in the Med/ Surg rotation taught the basic autoimmune diseases but nothing specific regarding PMR or GCA. So my story goes this way, June dx PMR tx 20mg Pred..now tapered to 5.5mg..always have taken meds after breakfast around 7:30 am with good relief all day ..only issue now is my RA in the form of Psoriatic Arthritis has returned with a vengeance, so back to the standard analgesics which help but until my adrenals wake up am struggling to know if and when I can go back to my standard antiinflammatories like Celebrex. So my advice is try different combos of administering your Pred until you find the best method for you..Shift work wreaks havoc on timing of med consumptions. Good luck, love this motto from our Union ..Save a life you're a Hero, Save a hundred lives you're a Nurse .

[Maggie69 in reply to Knitwit2020]

How very true. stay safe x u r so lucky how quickly you have been able to reduce I have had this bl--dy cursed illness since January didn't even no it existed 😪😪😪😪