Newly diagnosed ? timing of pred

[Lorraine786]

Hello all, I started on 15mg pred 2 days ago for possible PMR & had my first 2 doses at approx 9 - 9.30am with an amazing reduction of my symptoms which have been mainly shoulder, arm & femur pain. Today, I didn't have my pred until about 11.30 & by then my arm pain was coming back & is only just starting to resolve (3.15pm). My gp started the pred as all my symptoms fitted although CRP & PV are not raised. Has anyone else found that the timing of pred doses is this sensitive? I had taken the dog out for a walk for the first time in a few days so could it be that? We didn't go very far, probably about 3/4 of a mile .

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Usual recommended time is morning - with/after breakfast.

The substances that cases the Inflammation are produced around 4am on a daily basis so, some patients take meds (if they wake for a toilet visit) round 2am. The plain uncoated tablets take 1-2 hours to get into your system, so are ready for the 4am onslaught.

However you must remember that just because you are on the steroids, you are not cured , they are only controlling the inflammation mentioned above - you still have the underlying illness - so you need to play your part. Maybe the dog walk was just too much, too soon.

As for raised markers, around 20% don’t show an increase - so symptoms are always the key.

Have read of this - give an outline and some advice, as well as some links to pacing yourself articles -

healthunlocked.com/pmrgcauk...

[Lorraine786 in reply to DorsetLady]

Thank you, that is all really helpful, I'll aim to take the pred early in the morning now & see how I go.

[PMRpro Ambassador]

Welcome!

You sound like me - 15mg at 10.15am (after getting it at the chemist) resulted in a minor miracle at 4pm! However, after that I took it at 7.30-8am-ish with my first morning cup of tea. I also never had blood markers that went outside the normal range.

I'm also lucky in that the antiinflammatory effect of pred always lasted over 24 hours so the time I take it is fairly immaterial as long as it is high enough. However, even if you don't take it at 2am (there are a few who do!), the sooner after 4am you can take the pred the less inflammation has been created and the quicker the pred will work and vice versa. We used to suggest waking early and taking it a couple of hours before you intend to get up and then it is working by the time you get out of bed.

[Lorraine786 in reply to PMRpro]

Thank you, its good to know that. I'll make sure I take them early from tomorrow although I'm not sure I'll take them at 2am just yet.

[RecentPMRdiag]

Hi Lorraine786,

I am also sensitive to daily timing and one option that PMRpro suggested to me, and has had excellent results, is to split dosing between AM and evening. I initially started on 40mg and was ordered down to 20mg after 5 days, and then 15mg after a 2 weeks. Dropping from 40 to 15 was not issue, but I have been very sensitive to each reduction from 15mg.

My experience is that I started taking me Pred in the evening (initially dispensed at 17:30). The Pharmacist said it 'only works taking it in the morning'. Given that I was barely able to stand, I gave the Pharmacist a thousand yard stare and said 'I need to sleep tonight'. This forum helped me understand what the Pharmacist had probably meant to explain and therefore after 10 days , I spent 3 days moving from evening to AM (as soon after waking as I could face eating). However when I reduced from 20mg to 15mg daily I struggled to find a comfortable position in bed/sleep again. PMRPro said some folks split their dose and I tried splitting my Pred 10mg in the morning and 5mg between 20:00-21:00, whenever we have supper. This worked well for me, and I had the relief overnight and no significant recurrence of symptoms during the day, whilst staying at 15mg. I have kept up the split dosing through the reductions to 13.75, 12.5mg and now 11.25mg. I have reduced quickly because my GP wanted me to follow the NICE guidelines, but I felt my symptoms were only just under close to flaring.

I keep a daily record of dosing times, symptoms, exercise, sleep and some diet info. This has helped me conclude that when I have had an increase in symptoms they are reactions to increases in activity/exercise (usually takes a 1-2 days), or diet lapses (to much simple carbs - which impact the next day). I have also noted that only a 1mg daily reduction, or increase, can have a significant impact on symptoms and fatigue levels. i have also noted that different symptoms react with different speeds to the Pred - for me the legs and back are quick, but arms/hands are very slow.

As I have tapered I challenged my GP and Rheumatologist with the question - "What is meant by 'sufficient' Pred that the PMR being 'under control'?". The Rheumatologist's answer is that my daily experience of only 10-25% of the original symptoms, including arm/hand weakness and aches that can take all day to clear, is "under control" and therefore Pred is sufficient.

I hope your dog walks won't result in further discomfort - my experience is that doing little and often exercise has been helpful in my recovery.

[PMRpro Ambassador in reply to RecentPMRdiag]

Only if that is the best you can achieve and higher dose doesn't work better ...

[Meggsy]

Hello Lorraine786. At first I took my pred at breakfast time but found I wasn’t functioning properly till 2-3 hours later. I changed to 4am and that works fine for me. I usually eat half a banana with it. If I’m out of bananas I have half a vegemite sandwich (1 slice folded), with the crust cut off. I don’t feel like chewing crusts at 4am. All the best 🌻

[Lorraine786]

Thanks everyone, it's really useful to hear your experiences. Yesterday was a much better day, I took my pred at about 7.30am & was able to function pretty well all day although I didn't take the dog out. I'll try a short dog walk later on today once this mornings dose has well & truly kicked in.