I am writing for advice and also for consolation. Mornings, for the first hour, really are hell! It has been that way ever since I was first diagnosed in 2019 and I’m wondering if that’s normal if you are tapering down to 2.5 mg pred or whether I should be upping the dose! As is the case with most people I’m extremely keen to get off pred, especially as some semblance of body shape is returning 😂. I haven’t had blood tests taken for 6 months or so, should I go with morning pain and continue to taper( very slowly, DSNS) or have bloods taken? I am under a lot of emotional stress and having to look after my wonderful but utterly exhausting grandchildren a lot.
I don’t know what to do, up until now I have been more “ in control” and got positive results from tapering. Your advice, and comments, as always would be hugely appreciated. Thank you. X
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Bubble56
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The morning pain is absolutely normal providing it isn't getting worse..
The inflammatory substances that cause the problem are shed in the body at about 4-4.30 in the morning. The sooner after that you take the pred, the less inflammation has been created and the less work the pred must do. It takes about an hour for prednisolone to get into the system and start working, prednisone takes a bit longer is it must take a detour through the liver to be able to work.
A study established that the ideal time to take plain pred is 2-3am - then it is present in the blood stream, ready and waiting for the inflammation to be created so it never starts in the first place and the morning symptoms are less pronounced.
And the stress really won't be helping - always prods PMR into life. I would try changing the time you take the pred if you can - that might be enough to make mornings more pleasant. If not - maybe a tad more until the stress situation improves. Prof Dasgupta told us a couple of years ago that he often keeps patients at 2-3mg longer term to reduce the risk of relapses. And that is the last thing you need.
Thank you for replying so quickly, it always helps to understand things and this morning I was crying with despair. You have reassured me and I think I’ll stay on 3 mg for another few weeks!
So your mornings are actually worsening? That probably means that dose isn't quite enough - it is low enough to have few downsides so don't rush, At what dose did you last feel pretty decent?
When I am on 3mg I feel much better. I hear what you say Dorset Lady, unfortunately my daughter and her husband are getting divorced, 14 years and 4 small children down the line and it is heartbreaking. She needs help and support and it is SO hard to say no, my husband still works full time but does what he can to help. I am aware I could crumple physically and mentally at this rate........ BUT it could be worse!
When my daughter got to the other side of that (though only 2 bigger kids because he insisted on waiting for the divorce despite being separated, probably because he had the house and money) life looked up a lot!
I did guess it might be something like that, unfortunately happens all too often, and mum/grandma has to step in.... bad enough when you are fit, but really hard work when you're not...I know you have to do what you can, 🌸 ..and if you feel better at 3mg, then stay at 3mg...
My son has just finalised everything for his divorce and the stress of that is what I think contributed to me getting PMR. It wad horrendous. I am now down to 6mg prednisolone after 12 months and hope to slowly continue tapering. A friend of mine also with PMR has had to stay on 3mg as she gets symptoms as soon as she tries to reduce further. She had now accepted that as a permanent situation. I found PMRpro's comment about the timing of taking pred very interesting. Why does the inflammation get going so early in the day?
cytokines -which are part of our normal release of different chemical during our circadian cycle -
The primary function of cytokines is to regulate inflammation, and as such, play a vital role in regulating the immune response in health and disease. There are pro-inflammatory and anti-inflammatory cytokines.
When your immune systems is not working correctly as in PMR or other diseases then the anti-inflammatory cytokines do not work correctly and allow the pro-inflammatory ones to dominate. When this happens within the blood vessels it restricts blood and oxygen circulating around body particularly in PMR to muscles around major joints and causes pain and fatigue.
Pred is used to dampened down your overactive immune system including the cytokines, and as the normal time for them to be released in the body is around 4am.
If you take your medication a couple of hours before that (or last thing at night) it is in the system ready to act….however it you don’t take it until after that time, your body may already be stiff and painful , until the Pred has worked (1-2hrs roughly).
Some people find their dose lasts longer than 24hrs so it’s not a great problem for them, but others do struggle so adjust their timings to help.
Something called circadian rhythms - the normal functioning of the body which is based on regular 24 hour that repeat. the pro-inflammaotry substances are released daily in everyone because they play a role in the day to day functioning of our bodies - but in people with autoimmune disorders they go wrong and attack the body inappropriately.
If you go to bed reasonably late it is ideal to take just before bed. It isn't released at all until it has passed through the stomach which is at least 3 hours and often longer. Then it works much the same way as the delayed release form of pred called Lodotra - you don't need to get up in the middle of the night!
Ditto to all that PMRpro said…and I’m sure there is a very good reason why you are looking after grandchildren…but you also need to look after YOU. Crumple -and who’s going to look after them and you.
I agree with everything said here, but will specifically address your tapering problems. I had been stuck for a while, and also had a flare within the past year which seemed very difficult to dampen down. What I learned is waking up at 2 am to take my dose (which is low, like yours but it was maybe as much as 8 when I started doing this somewhat more than a year ago) leads to a much better day altogether because I wake up pain free. I have everything ready, the pills measured out, a small serving of plain yoghurt and some water. I thought it would be hard to get back to sleep but have not found it so. When I tried a while ago to go back to the traditional breakfast time I did find it was less effective, so quite quickly returned to 2 am. It is worth giving it a try.
Additionally, I've looked back at my calendar to January, and I see that although sometimes I had to increase for a day or two, and other times I attempted unsuccessfully to reduce, I was at 3 mg for most of this year, until the last month when a taper to 2.5 seems finally to have "taken". Before my flare and excluding a brief flirtation with zero, I had actually been at around 2-2.5 for several years. Some of us simply need a vanishingly small dose indefinitely. That's the way it is. Eventually I suppose we'll get off but just not yet. Btw I've been taking pred for seven years.
Dear BubbleI so sympathise with you. My mornings are bad to. Stiff, low mood exhausted and knowing that all that helps is to get up and start moving. It is a difficult to explain to family that really needs you how you feel and it makes me feel so guilty if I should say no - so I too just push through helping my sick mom and grown son through divorce (he is better now - they all recover, even when you think it is not possible). At the same time looking after my daughters children 2-3 years (because I love them) and hubby is working. Listen to the experienced ladies and do not tapper while in stressful living.
Thank you all for your replies. Unless you need help you cannot imagine how emotional getting help can make you! I am going to try your method HeronNS and set my alarm for 2am, I imagine not getting back to sleep won't be a problem 🤞. Being left literally "holding the baby" is common for us grandparents but brings its own joy and we do it because as krillemy says ... we love them.
Hi Bubbles, nothing particularly different to add to the other comments other than I have been taking my Pred around 02/03:00 in the morning for many many months now and I have little or no problems in the morning or generally throughout the day. Stress is not good and with everything going on I personally wouldnt be thinking of tapering at the moment.
As a doting grandma too I found it difficult to say no to childcare. Especially when a divorce happened for one son I felt I had to give the other equal help for his. Loved it as well as realising I was slowly going under. This led to a diagnosis of a chronic form of Leukemia!
That focused the mind and led to me starting some discussions with the whole family looking at what could be added or changed to help us all.
Outcome was that friends were included into the overall childcare requirements and for one family she changed some working hours which meant I didn’t do early mornings. Amazing the difference it made to all of us.
Is there any chance you could have an open conversation with those concerned to explain how the overall responsibilities are thought about together. As the others have said without you keeping going
I am going to have to get extra help from somewhere, it has reached that stage and thank you for your advice.....not doing early mornings would be so much easier.
I have been thru that era in the last few months. In hindsight I should have stayed at about 3mg for quite awhile longer. I went lower and had a flare . Don’t rush . I was so keen to reach the finish line too . Understand where u r at with grandchildren too . 😘
I did as was suggested yesterday by HeronNS and set my alarm for 2 am and took 3mg of pred, fell asleep again immediately and the difference this morning is quite remarkable!!!! I could even bend down to get the shower gel off the floor of the shower....... yay ! As long as it doesn't upset your sleep pattern I can highly recommend it. I am not going to attempt to reduce any further either. Thank you, thank you, thank you.
I would say your dose isn’t enough or needs to be timed differently. You can try 1.5mg in the morning and 1mg at bedtime. If that doesn’t help mormings, up your dose. If my pain returnsovernight I take that as a sign that I have gone too low.
I too started taking my dose at around 2am and it quickly relieved my morning stiffness. The problem was I couldn’t sustain waking at that time as I sometimes slept through, sometimes dropped pills in the dark, and found it difficult to get back to sleep.
So I started splitting my dose and stuffing my uncoated pred in empty enteric capsules which allowed me to take my night/early morning dose at 11pm and it would be on board by about 3am. I take my second dose around 11am (plain pred not in capsule)
Because you are already at such a low dose it probably doesn’t make sense to split it, but you could invest in empty enteric capsules and take it before bedtime thus avoiding the 2am wake up routine.
Good idea, thank you. I have to admit I am laughing at the thought of losing the pills in the dark!! That would be me .....then my husband would be awake too 😂. Stop sharing a room would be a good idea!!!
Hi Bubble, it does sound like you are keen to get off prednisone all together, but the daily amount you are using is quite small, and risks are minimal at that level. In my experience, stress is absolutely incompatible with PMR. Anything emotionally or physically distressing causes my PMR to act up, and My days can become miserable. I used to fight the reality of how serious this disorder actually is…but after nearly a decade, I have come to accept that prednisone is my friend, and I really need to use the help it provides,… in order to have some semblance of quality of life.
All this being said, It is my opinion that you might find life more manageable if you gave yourself permission to stop tapering for a while, and perhaps added a milligram or two, to your current daily dose. The stress of your daughters divorce, and the responsibility of caring for your little people, create a huge physical and emotional burden that would be difficult to manage even if you did not have PMR.
Again, this is my only opinion, but do take a little time to consider the message contained herein…it could make your “Morning Hell” less painful, and leave you energy to enjoy a cup of tea. Kind regards, Jerri
You are absolutely correct, I am obsessed with coming off pred but certainly at the moment I have enough to contend with. Thanks to everyone here I’m going to stick on 3mg for a while , take it at 2am, and deal with everything else first. Your opinion is a valid and valuable one . Thank you for taking time to reply. I wish you well.
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