I take my steroids at 10 pm but I find around 4 pm o start to get a few aches back arms It doesn’t seem to get me through the whole day. Does it mean I need to up! Or any other suggestions. Iv gone up to 18.5 for 10 days due to what I think was a flare. Would appreciate advice. Thanks.
Prednisone : I take my steroids at 10 pm but I... - PMRGCAuk
Prednisone
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Uglow
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What are you doing up to 4pm? Is there any chance you are getting muscle fatigue? Just a thought.
Hi Uglow
You appear to be changing your dosing & timings fairly frequently, it’s not really giving your body chance to settle.
I’m not sure that 10pm is the best time to take your main dose.
Some people split their doses & others take them in the early hours but l wouldn’t recommend you put the dose up again without consultation with your Doctor.
I will look at your Profile when l get home but could you update with the changes you’ve tried or post below & then maybe we can recommend a way forward.
Kind Regards
MrsN
he best time to take your pred is after 2.30am - so anytime you wake up after that time take your pred (with food and a drink or a yoghurt will do.
You need to be aware that yo-yoing is not a good idea.
Use one of the tapering plans and until you get to 10mg - drop no more than 10% at a time and it still would be best to use a plan.
You are letting the inflammation build up and then need a higher dose because of going up and down to manage the pain.
Did your medics tell you to take your pred at 4pm or did you just decide yourself?. Normally they tell you to take them at breakfast time. Also if you take Calichew, don't take them when you take your pred. The rule is Pred for Breakfast, Calichew for lunch. Taking them together means neither works correctly.
DorsetLadyPMRGCAuk volunteer
Agree with MrsNails you are chopping and changing things much too often.
I do realise you have other issues, but
your body and illness need time to adjust to medication - at the moment you don’t seem to be giving it a chance.
Why are you taking dose at 10pm? Is this advice from doctors or your decision?
I decided to take at 10pm to avoid any sleep disruption and read on here somewhere that it would be ok so when whatever it is that kicks in at 4/4.30 there’s pred already in system. It’s all Overwhelming me. If you can help me make a plan I will follow as you say.
If I have to change time it’s ok. I use to take 9 am with yogurt. sorry to be a pain with all this. Just can’t seem to get it right. Gp has never told me even to take all they say is we need you to cut down then I do and pain comes back. I was down to 12 then pain came back and I did sick day rules.
Oh Uglow you are in a mess & tinkering around with doses & timing isn’t giving you a chance to get on an even keel. Questions
1. When were you diagnosed?
2. What dose did your GP start you on?
3. When did you change to 10pm?
4. Have you taken higher doses with Medical Advice?
Please give answers to these questions but l think you need to see your GP to get yourself on track we can make recommendations but you must do your part by resting & not overdoing it…..
Diagnosed end February Start dose 15
Changed to 10 pm to avoid fuzzy mornings
My dose change was on sick days plan on here.
I just trying to work out when to go down.
2/3 weeks on 17.5 from 12.5
Not sure when to drop back to 12.5
Morning Uglow
Ideally l’d like you to see or speak to your Doctor to get a proper plan in place….
You must start taking them as prescribed in a morning & stick to it. The changing of time’s & doses simply clouds the problem.
Ordinarily the Taper is
17.5mg is to 15mg
15mg is to 12.5mg
But IF after speaking to your Doctor you could try tapering as below if he agrees but he may have a better plan. This is merely a suggestion.
17.5mg -> 15mg 4weeks
15mg -> 14mg followed by 1mg drops 4weekly until 10mg
But you must get Medical Advice
No one on this Forum is Medically Qualified to Prescribe or Make Changes to Your Regime.
As l explained yesterday many Members tweak their doses to a time that suits them BUT it must be after discussion with your Doctor or Consultant.
I have always taken mine in a morning except for one month when l split the dose as a trial with my Consultants Approval - it did not suit me!
We are concerned about you & want you to be as settled as possible.
Kind Regards
MrsN
PMRpro DorsetLady Fran_Benson
That's really strong advice from those who know Uglow. Make an appointment, write down what's happening with you and explain why you adjusted. They ought to understand and then you should be able to have a sensible conversation. They do after all genuinely want us to get better but some are a bit set in their ways. Stick with the fuzzy mornings. I get that. It's when the pred is trying to suppress the inflammation I think. That's how I interpret that feeling now. It has lessened as the inflammation is getting under control. It takes an hour or two for me after taking pred to feel the effect working so I usually do office stuff till then or read or take a nap. When body feels like its ready to work I go and do physical stuff but not more than I feel sensible (in my case that's questionable 
) Because I have adjusted my dose to two periods to overcome the sleepless nights the morning dose is taking longer to suppress the GCA but the PMR is still well controlled. It might be that I need more but the Dr. knows what I'm doing and is in consutation with the Rheumatologist I'm supposed to be seeing in November so they are aware of what I am doing. Good luck with the consutation with your Doctor.
PMRpro has made good suggestion re timings…….and I would agree with her.
But as stated by all of us you need to talk to doctors - tell them you are having issues and need to reduce more slowly. …and be honest with what happens when you follow their plan.
But, first of all you need to get yourself stable - be that at 15g or 20mg……stay there for 3-4 weeks, and then reduce no more than 10% a time, and preferably at monthly intervals, no sooner.
And remember you have a serious illness, and adjust our days accordingly! That is within your power.
Has your GP referred you to a rheumatologist? If not, why not? If they won't do it, is a private appointment an option for you?
Have you only seen one GP? It might be worth asking if there is anyone who actually knows something about PMR? Or taking this link to the GP you have already seen:
rcpe.ac.uk/journal/issue/jo...
It is a recommended approach to managing PMR and was written to help GPs manage their patients when they can't get advice directly from a specialist. A consultant at Luton hospital is still using it because it works well. Yes, you must taper the dose of pred - but it must be done in a structured manner and not too fast as this is a chronic illness.
But you MUST start simply - it is only when you know your body and YOUR PMR that you can tinker. People on the forum who don't take their pred in the early morning which is usual are doing so because they have had PMR for a long time and have worked out their approach with their GP or rheumatologist. You aren't at that stage yet.
I had problems with a morning dose...no energy until around midday.I take mine at 7.00p.m. (doctor, whose mum suffers, said to try it) with and evening meal. I sleep well and I am okay until around 5p.m. when I have a short nap, having done house work and (sometimes) shopping or been for a cuppa with a neighbour.
I have other health problems too...AF/CD and arthritis from a spinal fracture.
I hope you find the right time and dose for your problems.
PMRproAmbassador
Instead of switching your dose all the time you need to stay at the starting dose until you are stable and then reduce slowly. You MUST sit down with your doctor and get this clarified and stop changing doses and times willy nilly. You aren't giving your body enough time to know where it's at plus YOU have to take some responsibility for taking note of what things help or which make things worse. If you are chasing around all morning doing things, it may be just you are trying to do too much. Your doctor works on you taking your pred in the early morning and that is what they are used to. If you are finding mornings hard, try taking your dose of plain white pred a couple of hours before getting up and settle down for another couple of hours to give the pred time to work. Then the antiinflammatory effect will last through to the evening.
PMRpro & DorsetLady have said exactly the same as l would of….If you are on 17.5mg start taking them in a morning, first thing when you wake up when you have your Cuppa Tea, have a plain biscuit or some yogurt.
Then relax a while, plain uncoated Pred takes about an hour to kick in, you should then find that it lasts you through the day.
Take your Calcium Tablets at Lunch & Tea Time - just not within 4hours of Pred as they interrupt the absorption of the Prednisolone.
You need to take it easy, you are a relatively New Patient who l suspect was trying to run before she could walk.
For Information Only
There are other people on this Forum taking their Pred at different times of the day/night - these people are ‘Longtimers’ they’ve been there, done that & got the T-shirt. They’ve OK’d it with their Consultants or Doctors after finding what works best for them.
But you must follow your Drs Guidance as otherwise he won’t have a clear picture of what’s going on. If you are NOT Responding as he would expect it might be time to consider a differential diagnosis.
Drop by No More than 10% of the Dose you were on & you can use a slow taper.
Keep to the same Dose for a month before you start your Taper - maintain the time you take it every day.
Prednisolone is a very powerful drug & must be treated with respect.
Please read The Difference between a Flare & Reducing Prednisolone - you’ll find it in FAQ & below -
healthunlocked.com/pmrgcauk...
The Slow Taper Plans.
healthunlocked.com/pmrgcauk...
Best Wishes & Good Luck 🍀
MrsN
Morning Uglow, hope things are settling down, but please follow the advice from the very knowledgeable and experienced members already given. My personal preference is on taking my Pred at around 02:00-03:00 every day, with some Greek Yogurt and a Banana. That gets the Pred into my system in time to deal with the surge in inflammation that appears around 04:30ish and that, so far, keeps me going throughout the day.
Hi Uglow, I am not one of the experts on here but I have learned a LOT from them. One of the most vital bits of advice given to me, by PMRpro I think, was to try taking my pred at around 2am, or thereabouts. I have been doing this for two years now and it has changed my life. I used to awaken with aches and stiffness that took until midday to lessen when I took my dose at breakfast. While it has been a bit of a rocky road at times, this advice is the singularly most valuable I have been given.
Morning Uglow. It's confusing sometimes because the hardest thing for us to understand is that we are not in control but this disease is and we need to change our approach completely. We want to make it improve but until the inflammation is down there's no possibility of improving our muscles responses. I am still on the prescribed dose of 40 mg as my CGA is still niggling away . The PMR part of this condition seems well controlled since all muscles are working well with no adverse effects and my stamina to do things all day is back. However towards the end of the day I have noticed temple pains and eye pressure emerging and during the night they increase so that recently they have woken me at 3am or earlier. I decided to split my dose and told my Dr. I now take 20mg with breakfast and 20mg with lunch. I am trying to move the afternoon to tea time so that it lasts all night with the GCA and give me a good nights sleep. To get there I pre-prepared food for an early wake to take the pred. at 1-4am as the pain only responded to pred. paracetamol didn't work. It seems to be improving. The lower breakfast dose is keeping the PMR down but is taking a while to suppress the GCA pain. It is manageable and seems to be working as I hoped. It may take a few more days but the key is to stay with a dose that can manage the inflammation first and then adjusting to cope with resurgent pains I think. I too believe that my dose is only just sufficient to cope with both but since the PMR seems well controlled I am trying to find ways to make the dose work better. God luck and do listen to the knowledgeable people on here. I am a newbie so not very experienced.
I agree with all the comments. From my experience, when I was at higher doses, my rheumy only reduced the dose if my blood work showed reduced inflammation (ESR/CRP). Even though I was told to take my dose in the mornings, I noticed that when I took my full dose at 7 am I could get relief from pain by 1 pm. I realized that my body metabolized the Pred in 6 hours. I divided the dose 2/3 in the am and 1/3 at 11 pm. The nightly dose gives me relief by the morning so I wake up pain free. It can be very confusing but try to listen to your body's reaction to Pred and having a good rheumy is important too. I don't think it's a good idea to reduce if you are still in pain.
Fran_BensonPartner
Dear Uglow, PMRPro, DorsetLady and MrsNails are right - you must discuss your steroid doses with your doctor. This site is not a substitute for your clinicians advice. Do book an appointment as soon as you are able to. There are lots of good ideas given above that you can discuss with him/her.
I am going to turn off replies now but do feel free to let us know how you get on with your doctor.
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