I will take my pills. The question really isn't whether I will do it. The quandary now, and I always seem to be in a new one, is when I will do it.
I know the natural rhythm of the body seems to dictate adding prednisone to the system in the morning: working with the adrenals ( they probably aren't doing anything anymore though). But I my body hits the wall in a big way five hours after I swallow my 16 and a half mg . I can count on laying down and feeling completely depleted every day by 3:00. I am seeking the collective wisdom of this group to weigh in on my notion to swallow my prednisone with supper. Then I'll be sleeping when the slump hits. Maybe life will feel better, the family won't see me collapse, and we will have a little season of quality time during the day. It's been 15 months. I'd like an uptick of joy right about now.
Thank you very much.
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Blurry62
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The only way to know is to try. Trouble is you don’t know how your day will pan out, or if it will adversely affect your nights sleep.
Pred never affected me like that, so can’t offer personal advice.
If that doesn’t seem any better after a couple of weeks trial perhaps splitting your dose might alleviate some of the issues- approx 2/3rd am, 1/3rd evening.
Very often it’s a matter of trial and error to find what suits YOU best.
Hello! I am hoping that everyone who got in on this initial post will see this. Am wondering if I should start another post altogether. I will give it a go. I tried splitting my dose of prednisone to see if I would obtain relief from the afternoon slump; it didn't help. In fact by day two, I had a headache ramping up,chickened out and went back to one morning hit of 17 mg. for the GCA.
Life is seldom smooth. I wish I could say definitively what caused the flare: Was it the experiment with my medication or the emotional turmail with my son? Probably, it was both. Within three or four days I was in full flare and now I am on higher prednisone again. (huge collective sigh)
There is good news to report. I faxed a copy of the dead slow nearly stopped...taper schedule to my vasculitis specialist, along with a plea to be heard and entreaty to "pleases consider" my request. He did, mostly. His concern that I have been on over 20 mg of prednisone for most of 15 months is palpable. He said he'll be on board with the dead slow taper as soon as I am down to 10 mg again. If I get into difficulty on the way down to 10 mg - he's open to slowing it down at any point--slowing everything down more. I suppose what I have here is partial compliance from my doctor but, it's a step, and I think he will go along if I get into trouble.
I've felt pretty badly until the last two days. Wanted to get back on and tell you what has happened but, ran in to trouble logging in. ( I tried using two devices and everything got messed up.)
I'm on 25 mg right now. Supposed to reduce to 22.5 in another week. (I intend to go more slowly ) If that goes well, he said to maintain there for two weeks and move down to 20 for two weeks. Once I am comfortably at 20 mg. he wants me to reduce 1/2 mg every 2 weeks - until I reach 10mg.....
Thanks. That doesn't sound too bad - and compared to most doctors that is a skow taper which I'm impressed with. A new post will give you info from others, not just me.
I have always said my PMR pain was worse in the night, so when I was on high levels of pred I took most of it at night and the rest in the morning. Trial and error!
I did say "pain"! The stiffness and fatigue were worse during the day.
I had that problem; I couldn’t stand up when my Pred hit its peak. I took it in the evening before bed so I slept through the worst. My Endocrinologist has said that at doses above 5-10mg the adrenals will be well and truly switched off so timing is not critical. When one gets to 5mg and below it is advisable to take it in the morning.
However, through all this, until I got to about 3mg no matter when I took my Pred I hit an almighty slump about 2-4pm and needed to go to bed. It used to be for 2 hours but now at 2mg it can be a good quality 20 mins that will get me through. That’s probably the disease I suspect.
But then those slumps and hours of insomnia at night do come in at the same times that I would feel tired or weary in the day before having GCA/ PMR.
I do feel like some of the old rhythm of our system does affect when we hit our Fatigue times.
I just submit and don't feel guilty when I need a nap or lie down at those times now , or knowing some parts of the day are worse than others plan my activities around when I am most capable of doing them .
I know you and others have advised me to try to listen to my body and accept what's going on. I really am trying to do that. I have done that pretty well until the last three months. Right after I joined this group I snapped emotionally. I learned gca is a condition that will be with me for years , rather than the one my doctor promised me. Lately, and I suspect it's dealing with chronic illness and perhaps tapering, I'm fighting serious depression. I need my days to change.
Bereavement runs very deep and it takes a long time before colour comes back to life and you find yourself open to joy. I’m glad you have someone professional to talk to. 🌺
I can really relate to your feelings of serious depression. I was bumbling along quite nicely doing a slow taper and feeling in control as if I was winning. I had a Synacthen Test ( too soon) at 6 mgs and was told unsurprisingly, that my Adrenal function was poor. I was told by the Endo to come straight off Pred and go on to 25 mgs of Hydrocortisone reducing rapidly to 15 mgs. My Rheumatologist gave different advice. To carry on tapering Pred slowly but add Methotrexate to aid the reduction. She suggested that I have Psoriasis Arthritis that is causing symptoms of pain and stiffness. No examination or tests, just going by my dry feet that flare in hot weather, I am paralysed and have done nothing. From feeling optimistic and in control, I have been left feeling a failure, confused about next steps, really reluctant to take another strong ( possibly unnecessary) drug. My mood has taken a real dip. I feel like I have been robbed of the goal I thought that I was successfully moving towards. I am now on 5 mgs. Main symptoms are fatigue and you’ve guessed it - reactive depression and yet objectively, nothing has changed. I see the Rheumatologist in 2 weeks. I imagine the Endo thinks I’ve moved to Hydrocortisone. I was doing fine!!!
Childish rant - sorry. But the trigger maybe like yours - having your expectations dashed by doctors.
Not a childish rant , I didn't realise what a nightmare you were going through at the moment SJ no wonder you are feeling the mental strain of it all.
Definitely worth coming for a rant whenever you need one.
Do you have any CBT or relaxation therapy help , or self care things you do that make it feel a bit better.
This definitely sounds like one of those situations were getting to thrash it out with a Drug or Pain Management or Chronic Illness Counsellor might be of great use.
Just getting more of your questions properly answered doesn't solve all the mental issues but at least helps you to see were you can find some control and reduce them.
Thank you for sharing this. I completely understand and sympathize with where you're at in processing all this. I have said no methotrexate and actemra both because, I feel the steroids haven't been tapered properly yet. At least not in the way I need. Until I've exhausted prednisone treatment for my GCA, I won't discuss anything else. I wouldn't have peace with it. We will live and die in our bodies. The doctors need to respect what we want! They need to listen. It is incredibly frustrating and paralyzing -yes- to have two doctors telling you two different things. All you want to do Is feel better and get on with your life. The fact that opinions vary in regard to treatment confirms in my own mind that they are doing some amount of guessing in treating us. Medicine is not an exact science. I can do the research, listen to my body, and the collective wisdom of other patients, and decide what I want to do. I want the doctors to come along side me with their expertise but, My vote outweighs everyone elses.....because it's my body and life.
I'm giving you a "hug" right now. Take a deep breath with me. Give yourself time to sort it out. Then tell your doctor what you rant to do.
I have to go talk to my doctors again as well. We can do this.
As Pro said perhaps enquiring about some counselling would help.
My mother got referred to Counselling within the NHS specifically for those with chronic , long term and life threatening illness.
She was originally sent after being diagnosed and undergoing treatment for Bowel Cancer , but her more recent Rheumatology and Cardiology issues and their life altering effects mean that her GP referred her back to this local therapy service.
It may be a good idea to ask your GP about being referred for Counselling relating to Chronic Pain and Illness in your area , and possibly from there you may gain access to CBT and other therapies which will help you learn techniques to cope with the Mental Health symptoms of your illness.
If they aren't sure where to send you , or to save time , it might be worth doing a Google search on Counselling Services in your area . Then you could find out before a GP appointment what's available and what you would like to try and give them the details to sort it out . You often get more local help by doing the research for them.
You could also look for support groups in your area , not just for GCA/ PMR but for Chronic Pain , Anxiety and Depression or Mobility and Mental health groups.
Even finding groups on this forum more involved in discussing mental health , it's causes and tips will help.
A lot of us are members of different groups on HU , not just PMR/ GCA for other aspects of our conditions.
You have come along way and you should actually be proud of how well you are doing in such a short time. Acceptance of having a Chronic Illness is hard and can take time.
Sometimes we feel like we are mourning the loss of our " Old Self" for a long time before we realise that , we are still " Us", we are not different people , it's just what we need to do that has changed , and we begin to see the positives not just the negatives of the
" New Normal".
This takes time while we get used to the medication , get pain under control , and adapt and learn the things that we can do that still give us happiness and enjoyment without affecting the pain.
Perhaps , in the meantime, you could start a little journal .
Not just the diary of symptoms for the GP but one of " Life's Positives ".
Note in it each day anything that you did that made you smile , made you laugh , gave you enjoyment or saw and heard that lifted the gloom .
Give yourself a well done on the page for doing even the smallest achievements .
Draw little pictures or do some colourful doodling for a bit of art therapy too.
Even just three , small or silly things a day and read them through at the end of each week.
As time goes on it will help you relax , just like meditation or breathing , and you will see a written record that things are often good and are getting better.
Reminders of the things that uplift you in the world do help to ease the negative impact of health issues that try to dominate it.
Hope these ideas are of some use , if not just keep asking for help , we're here xx
Oh ya!!!! That's sounding sensible. I admit this is what I want to hear but, I think it makes sense. It's not like I get great sleep any way. It's reassuring to hear from someone with similar experience. Thanks Snazzy.
My slump has been throughout the process right from being on 60mg when one is so pickled in cortisol no adrenal function doesn’t matter. The sluggish adrenals feels different and didn’t cut in until about 7mg. I’m the end it’s guesswork because it could be something else entirely.
It is less to do with the natural rhythm of the body than to get at the inflammation as soon after the new lot of inflammatory substances is shed in the body at about 4am or so. The sooner after that the pred is active in the body, the less it has to do and the sooner in the day you get relief. Of course, if the antiinflammatory effect of the pred lasts over 24 hours for you, you may not notice it.
Are you sure it is the pred causing the slump - and not the PMR/GCA-associated slump that many of us experience in the afternoon? That can be avoided by actively planning a rest BEFORE the slump arrives - and in the end you have more productive time in the day than if you didn't rest. The peak level of pred in the body would usually be about 2+ hours after taking it - which is why I wonder if at 5+ hours it is entirely the pred.
As DL says though - the only way to find out is to try.
I have always always experienced this five hour slump. I feel pressure building in my trunk, face and neck... Then , oftentimes, but not always, headachy and down I go. Whether 60mg or 16.... It is the same.
If GCA then maybe not a good idea to split Pred, some do - but I never did.
You could still try change of timings though.
Have you mentioned this to your medical team?
Just as a matter of interest are you taking plain white uncoated tablets or the coloured coated ones? As PMRpro says the plain ones usually take about 2 hours to peak, the coated ones a lot longer.
I'm also fighting serious depression. Just in case you don't read my response to Snazzy. It hit me just now... I need help with this issue as well. I want you to know.
Not really - in fact I'll change the post a tad ...
But that increases my suspicion that the autoimmune disorder is at least partly implicated. While maybe the pred isn't doing the depression aspect any good. Though neither will the systemic inflammation. It does become so complicated sometimes - as if it weren't anyway!!
I’m different, with intreated ramping up GCA my mornings were the worst, especially on waking. Until 7mg is would bounce out of bed like I have done all my life, insomnia or no insomnia. Since 7mg my head no longer switches on with the sunrise so getting up is more of a trial.
I get a slump when I've done something active, or even vaguely pleasantly stressful, like socializing. I now know when whatever I've been doing is over I need to sit and recoup, tea if the right time of day, do the sudoku, whatever, simply zone out. It's unavoidable. And with a dose of around 2 mg it's not feasible to attempt to spread that out in any way!
Do let us know how tweaking your pred schedule changes things for you, hopefully for the better.
I agree sometimes it's doing the really fun things and not remembering ( or wanting to follow the rules) to take a rest gives me as much, if not more , Fatigue than the bad things do.
That blow back of pain and tiredness is also the most frustrating, and therefore , depressing because it reminds us of our limitations but the wish we didn't have them.
I kind of look upon it as if I have an energy bank, so refill by resting before activity, do what has to be done and then rest again. I do look forward to sitting down for a couple of hours at lunch-time when I can.
Yes, that's my experience as well. But mine usually requires an hour and a half sleep. I never feel "good." My muscles scream when I walk further than 200 ft. Do you get this?
No, never screaming muscles. I don't think exercise with PMR has ever done this. It would only happen if I were doing something I never do, like trying to run a race, or if I run too much if I'm late for something. Even then I don't think I'm actually strong enough to reach the screaming phase, I'm always out of breath first.
i do find it quite easy to nod off at the drop of a hat....
I only run for the ferry or something. I'm getting a bit better - five years since I had the broken leg, about time! My son, who has run several marathons, this morning completed the local (Bluenose) Marathon with an excellent time. The most I ever managed was a 5 k run. But OA in the spine means I really can't take much impact.
I used to enjoy a run , not a chance just now , but certain female attributes did mean doing marathons or getting great times was never going to be an easy option , if you know what I mean .
Being Bleary-eyed is bad enough without two black eyes!!
Can't remember sorry , are you actually being seen for any other muscle or nerve related issues or do you take medication for something else like Neuralgia , Fibromyalgia etc.
If you haven't been assessed for this and you are also getting alot more muscle pain issues outside the usual PMR/ GCA pain spots it might be worth discussing this with your GP as well.
Especially if you also experienced muscle pain or Chronic Fatigue symptoms for sometime before GCA.
I say this not to make you feel more anxious , but in the hope you can be more informed , get more medical advice and help , and possibly gain from extra fatigue treatment which will help with the Depression as well.
Sometimes an extra diagnosis can be a positive rather than another thing to worry about by adding control to your situation.
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