Hello everyone, I was diagnosed with PMR in March last year after a couple of years of pain and feeling generally unwell. I started on 15mg Prednisolone and was so relieved when it alleviated the pain and gave me back some energy. After 6 weeks I started a slow taper of 0.5mg every 6 weeks and now have 1 week to go at 5mg. (It has gone relatively smoothly though for a few non-coping days here and there I have taken an extra 1 or 2 mg.)
I am very keen to know people's experiences of side effects at low doses - my mood is now consistently very low and I often feel teary and sad and extremely anxious, I lack motivation, am extremely irritable and feel somehow weak and shaky inside myself.
Also, I have become extra-conscious of my heart and am worried because when I go for a brisk walk my heart rate sometimes becomes elevated to over 160bpm and yesterday maintained this rate for 5 minutes and peaked at 177bpm. Is this something to be concerned about? Have others experienced these issues as side effects of a lower dose? Thank you very much and all the best to you all. Leigh
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LeighDelaine
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At this level would say more likely to be adrenals stuttering into life again rather that side effects of the medication. Have a read of this link -gives lots of info on adrenals.
Maybe stay at 5mg for a while and give adrenals time to awaken.
Probably a good idea to get heart/blood pressure checked out just in case anything untoward.
Thank you so much for your prompt reply and for the links. Very helpful and I think I will stay on 5 for longer to give my body time to adjust. Thank you again.
"my mood is now consistently very low and I often feel teary and sad and extremely anxious,"
Very common as you get into the realm of "returning adrenal function" - and that will probably also account for the effects of exercise on heart rate because normally you would get a boost of cortisol to help but that isn't there yet.
Take it a bit easier - but a few minutes of high heart rate is OK, it is when it persists you need to worry. And one of our favourite PMR rheumies in the UK likes to keep patients at 5mg for up to 9 months (not always the full time) to allow the adrenal function to catch up and finds that makes the rest of the journey better.
Very grateful for your reassuring reply PMRpro. I think I will definitely stay on 5mg longer than 6 weeks and maybe until I feel my body is adapting better. The high heart rate always happens for a few minutes at the start of the walk, so your suggestion about the lack of the usual boost of cortisol sounds right. Thank you very much.
Instead of feeling delighted that I have got down to a lower dose of Pred (currently at 2.5 after 2 years) I have found it as difficult to cope with as when on higher doses. For the first time in my life I have felt quite depressed, have morbid thoughts and very short tempered. About two weeks ago, this low feeling slowly lifted and it is such a relief. I'm hoping this is just something I have had and will continue to improve as the Adrenals get going again but you have all my sympathy for this beastly time which I understand is quite common. I also had palpitation at about 7mg which has now gone. What a strange condition this is!!
As I mentioned in post earlier this morning those feeling you describe are due more to adrenals stuttering than the illness -see this healthunlocked.com/pmrgcauk...
Hi Leigh, yes I am on low dose because I had so many mental health issues and anxieties on the 15mg with rapid taper. I am now on 4mg and tapering 1mg every 6 weeks. I feel like you over anxious worried, irritable and angry, it's awful to be honest but have to put up with it. I only hope I can get off these drugs soon as I truly do suffer like you
Really sorry that you’re struggling too, Karendeena. Could you think about reducing by 0.5 instead of 1mg every six weeks? And have a look at the links Dorset Lady included in her reply above. I found the articles and comments really useful. No quick fix but very good advice. Good luck with it all.
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