Symptom Free Mornings

[LocalHero42]

Please can anyone offer advice on if I am on the right dose of Prednisolone, this because I have not been able to get to be symptom free in the mornings.

I was diagnosed with PMR last November. My consultant put me on a 20mg dose, which seemed to work quickly, except the side affects were not good. I began a monthly taper, down to 10 mg then fortnightly down to 6 and as I did so the discomfort in the mornings worsened. The consultant advised that I had gone down to fast and put me back up to monthly 10mg, with an expectation that I would now be on a monthly taper down to 7mg, when I would see the consultant again.

I have now been on 10mg for three weeks and mornings are not good, having said that they are 100 times better than I was before I started on the Prednisolone. I am stiff in my legs, and suffer from hip, knee and foot pain. My arms though seem fine which is good. By early afternoon, if I have been out for a walk, I am mostly symptom free, except if I sit still for too long. So my question are: firstly, am I on the right dose of Prednisolone or should I go up to say 12.5? and secondly should I stay on 10mg until I am symptom free in the mornings, or should I expect symptoms in the mornings as I gradually heal?

Many thanks

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

Can I suggest you have a read through this link so you have a better understanding of your illness overall -

healthunlocked.com/pmrgcauk...

But a few comments -

What side effects did you have on 20mg? Most can be managed quite well

As you felt good on 20mg, that is ideally how you should still feel after each taper…

How did you taper down to 10mg ? 20 -17.5-15-12.5-10.mg? That is a recognised taper, but some find it too quick..

Once you reach 10mg, recommended is 1mg every be-8 weeks… not every 2 weeks - much too fast and you are never 100% sure current dose is working sufficiently before you drop down. Do that 2 or 3 times and yiu never know what your last “good” dose was, and that matters when you get into difficulties as you have,

Simple answer to “am I on correct dose” - if you have no pain, then yes, if you do have pain, then probably not…

I’d give 10mg a bit longer- and maybe consider what’s time you take Pred in the morning…really as early as possible - as you can see from link 4am is when the inflammation shed happens - so as soon after that- or preferable before if you wake during the night for a loo visit…

Your PMR is still very much alive and kicking at the moment - it will go into remission, but in it’s own time .. until then, all you can do is manage it. …

[LocalHero42 in reply to DorsetLady]

Many thanks for your fast response and excellent advice, is very much appreciated !

[LocalHero42 in reply to LocalHero42]

I have just read all of the material you sent including the links and I just wanted to say thank you again for you are a real gem - I have learned so much more about PMR than that found on the internet. I will try taking the Pred in the night and we’ll see how that works out.

As you guessed I did taper from 20 mg in the steps you wrote. I will also stay on 10mg until my morning’s are PMR free.

[DorsetLady PMRGCAuk volunteer in reply to LocalHero42]

You’re very welcome….

[PMRpro Ambassador]

Hi and welcome.

I suspect your problem is that the antiinflammatory effect of pred is not lasting a full 24 hours for you. A new batch of inflammatory substances is shed in the body every morning at about 4-4.30am. If the antiinflammatory effect of yesterday's dose has worn off, they will get stuck in and cause inflammation and pain until the new day's dose reaches the parts that are hurting. Then it starts to have an effect quite late on so by afternoon you are much better.

One way to deal with it is to take your pred at 2-3am - the ideal time so the pred is in your system waiting for the inflammatory substances and snaffles them as soon as they appear before they can cause havoc. If you can't face waking in the middle of the night because you then can't get back to sleep, you can get a similar effect by splitting the dose, taking about 2/3 of it in the morning at a convenient time, with breakfast for example, and the rest sufficiently later to extend the effect to last until next morning. That means you can choose both times to suit you.

You won't "heal" in the usual sense of the term - the pred is doing nothing more than mopping up the inflammation to relieve the symptoms. It has cured nothing - it is a management strategy to make life more comfortable until the underlying autoimmune condition that creates the inflammation has run its course, burned out and gone into remission. That can take a year or so - or up to ten years or more. To be fair, a majority of patients are off pred by about 5 or 6 years and a lot much sooner but it really is a case of "how long is a piece of string?"

[LocalHero42 in reply to PMRpro]

Many thanks for your very helpful response - is very much appreciated!

[LocalHero42 in reply to PMRpro]

Please can you help further, if I was to take the pred between 2 to 3 in the morning, which won’t be an issue as my sleep is rubbish right now, should I also take with food or is OK just to wash down with water?

[PMRpro Ambassador in reply to LocalHero42]

One lady takes it with a piece of hard cheese. Others use a spoonful of yoghurt, or a glass of milk, half a banana. That sort of thing.

Do you take a PPI anyway? If you do it shouldn't be a problem anyway.

[LocalHero42 in reply to PMRpro]

Many thanks again. I am not on Proton-pump inhibitors, if that is what you mean? I will try the cheese route - many thanks 👍

[PMRpro Ambassador in reply to LocalHero42]

It was yes. Some doctors put everyone on them. I've never taken them except for another reason when told to. Hate them!

[GwenTheHen16]

Hi, I have been on Pred for PMR for 2 years now and been up and down dosages and get stiffness in the mornings. I realised that it was not covering me for the full 24 hrs so now I split it and take 1/3 in the evening around 10.30 and 2/3 in the morning after breakfast and now I can move freely in the mornings! My body is very sensitive to changes so am reducing 1/2mg every 4 weeks. Do far seems to be working 🤞🤞.

Everyone on here are very helpful . 😊

[LocalHero42 in reply to GwenTheHen16]

Excellent news, many thanks 👍

[Markandevie]

Why don't you try taking prednisone at 2.45 am as I have found it to work amazingly and the difference to taking it at 7am for example a transformation. Its a small inconvenience in return for those pmr symptoms. Hope it works for you too

[random901]

Hello LocalHero42! As from this morning I am taking my 20 mg pred at 4 a.m. instead of 6.30. Hoping to get going (as much as feasible) earlier in the day. 4 in the morning is when I usually get up anyway. Look forward to others' feedback.

[LocalHero42 in reply to random901]

I tried that last night. Am less stiff this morning which is positive but still have some pain in the hips and knees, plus I have a slight headache which is concerning.

[random901 in reply to LocalHero42]

Not really any improvement for me, yet. Slight headache and nausea but will stick at it.

[krillemy]

👀

[Zebedee44]

Like Gwenthehen above I divided my dose and took about 1/3 of my daily dose before bed so that I was pain free and fully mobile in the morning. Like yourself I sped through the taper programme as directed by my GP and without all the fantastic information and support from this forum which once found has been my constant companion through this journey of seven years.

[LocalHero42 in reply to Zebedee44]

Many thanks for replying it’s good to hear that there are others who share my issues 👍

[Paul76]

I have been having similar problems on 10mgs. I had a GP review booked and was not looking forward to it because it was a new GP and my previous one was very understanding and interested in the different ways of tapering. She seemed to understand that this illness is so different in lots of ways for lots of people. How wrong I was! I’ve been lucky enough to find another understanding GP. Funnily enough they are both females in their 30s. Perhaps their training covered more PMR detail and treatment. Just a thought. I explained that 9mgs was too low and had increased to 10mgs but still having pain and stiffness she advised that I would be better staying on 10 mgs for 3 months instead of trying to taper for a while and she’s happy for me to self manage. It was so refreshing to hear.

[LocalHero42 in reply to Paul76]

That’s interesting - many thanks 👍

[PMRpro Ambassador in reply to Paul76]

She gets our seal of approval!!!

[Myfoe]

I began splitting my dose since early in the PMR battle or I have morning stiffness I take 2/3 when I start my day 4:00 a.m. the other 1/3 at bedtime the caveat being I must not stay up reading until the prednisone is kicking in our I struggle to get to sleep less of an issue now that I am at 6-7mg rotation along with Kevzara and have been able to stop the bedtime dose since starting it I have had relapses (avoid at all costs very painful) the common denominator was dropping to quickly once I reached 12mg it became clear I was very sensitive to it and unlike many Drs think this is not a race to zero I take hard cheese and a cracker with my meds or yogurt if I’m out of cheese hope this helps take care

[LocalHero42 in reply to Myfoe]

Very helpful indeed many thanks 👍