Hi everyone - hope you are enjoying the Easter weekend.
I started on 20mg for 6 weeks. Tapering down 2.5mg per week on Mondays. At 15 - symptoms came back - but by the Saturday they were gone.
So the following Monday I happily started on 12.5 and symptoms came back again. I thought it would be the same as the previous week on 15 and that it would ease if I persevered. It did not and I have reverted to 15mg - for a week now - but symptoms have still not completely gone.
I take my Pred after breakfast and it is also around this time that the symptoms cone back (24 hrs) and last for most of the day - but seem to be better at night and whilst I'm sleeping.
So I was wondering if I should perhaps take my dose at night? Does anyone think that will help and how would I transition to that? I thought I was going along so nicely but now I am scared to put my body under stress.
Thanks everyone. I know I always just ask questions and don't contribute a lot - but I'm new to this - diagnosed beginning February thus year.
Written by
Slosh
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Hi Slosh, you really are racing along with your taper, its maybe that you've reached a point where the inflammation is no longer being controlled by your Pred. Dose and you may have to rest on your current dose for a week or so to see if it settles.remember you are kind of tweaking a pain killer to see how little you can manage on without your body noticing too much.
I am part of a PMR research programme at the moment and I wear a fit monitor that records my steps. We often do more than we think eg on a day I thought that I had done nothing much, I recorded 7000 steps. So make sure you are doing the taking it easy too.
A number of contributors on here take their Pred at night because it suits them. For me I think it would keep me awake.If you want to experiment I would just try it and perhaps record how you are each day. People who take it at about 2 am to head off the release of the inflammatory substance in the the blood at around 4 am seem to have had some success. As I normally visit the loo then, that would work for me taken with some yoghurt maybe.
Sheffieldjane I was very interested to see your reply to slosh in particular about your steps monitor. I have a similar gadget on my phone so I know how many paces I do each day. Has your research programme advised about how many paces it recommends? I know this will vary between people but a rough guide could be useful. Many of us on this forum were very fit prior to becoming ill and it is difficult to judge what is too much exercise. Particularly as we only know when it is too much!!
From what I remember when we discussed the study the idea is to get you simply to increase what you are doing from the baseline you start at. As you comment - you can't tell a patient how much they should be doing, it might be far too much. But if they start with 1000 steps a day and are able to increase it to 1200, then 1400 and so on they have added exercise but under their control.
No I wasn't given any guidance as to how much I should be doing. I was just told to go about my normal life. So far I haven't been advised to increase/ decrease. I am probably establishing a kind of base line.although human nature being what it is I probably go and fetch things from upstairs more willingly. I would love to know what a fit active 60 year old would record.
The example sheet shows time for a yoga class - maybe that's a kind of hint. I am thinking of Pilates for my husband and self, honestly it's in a house over the road from us, how much easier could it be?
Maybe as we gradually decrease the steroid we should equally gradually increase exercise?
Blimey - I don't think they showed me that! I think I might have suggested a more likely class than yoga! I did Iyengha yoga (postures) with PMR/no pred but it was heavily adapted by a fantastic teacher, you'd be unlikely to get such service in most classes. I did Pilates - being realistic it was far more use than the yoga but it too had to be adapted.
Thank you sheffieldjane for your help, it does seem to boil down to the individual fitness of each person. I am 76 next month but until this dratted illness struck didn't feel it. I am pacing much more carefully now that I have reached 4 mg as I think I could be close to the level that manages the symptoms. Lovely to compare notes with you.
I am glad you are getting on so well Brixhamhampster, this forum has been a source of great comfort and learning for me. A year ago, I hadn't even heard of PMR or GCA. Now thanks to this site I could pass a small exam.
Happy Easter! Everybody put your feet up and eat chocolate.
I do agree with you Sheffieldjane I feel like an expert on the subject too. I am still hesitant about offering any advice to new posts as I still feel a beginner compared with other seasoned experts here. However I do try to offer emotional support when there is a desperate early morning post. I am always awake drinking tea and reading this site! Happy Easter to you too and my chocolate of choice is 81% dark. One square and the world looks a better place!!
Thanks Shefieldjane - yes the 2.5 per week may have been too fast and I realised this at 12.5 but thought going back to 15 would sort it - but still have symptoms. My Rhuemy said to stay on 15 for two weeks and then go down by 1mg every two weeks.
The reason the symptoms came back at 15mg and then went again after a week was most likely steroid withdrawal rheumatism as it is called. Unfortunately, if you allow a flare - and that is even more likely with the 12.5mg return of pain - it is often more difficult to get the symptoms under control again and it pays to go slower and avoid such flares. I don't care what anyone says - 2.5mg a week is far too fast for comfort in any sense.
The reason the pain is worst in the morning is that the inflammatory substances are shed each morning about 4.30am - you could also try taking your pred much earlier than waiting for breakfast and then they don't have as much time to cause inflammation so there is less to do for the pred.
As for switching to nighttime pred - take a dose in the morning, take the next dose in the evening and then continue taking the next dose 24 hours later. That small amount extra for one day won't hurt and with a bit of luck you will have one extra good day.
But as SJ says - I bet you are doing too much as well.
Thanks PMRpro - I think I may have had a flare - because even back at 15 the symptoms are still not controlled and seem to last all day - better in the evenings and night.
Thank you for your advice about transitioning to nighttime meds. I am going to try it.
Hi Slosh I too was advised by my doc to reduce in 2.5mg steps, at 12.5mg pain returned with a vengeance. Back on 15mg my symptoms are slowly subsiding after 3 weeks! Combination of too much too soon and me being an idiot thinking I can carry on regardless...well I have learned to do a bit then rest for a while, simple ideas of collecting things to take upstairs over the day and tak up the next time I have to go upstairs put it away then go down and rest. Yes I do feel lazy, but pmr is very unforgiving. A little and often is better than the lot in one go. Happy Easter everyone. Eat chocolate, and rest.
MeggieKy - thank you so much for your input - that really makes me feel better and gives me hop. I am so new to this and don't know what to expect or do.
I am desperate to get well and go back to work as Ihave gone through my savings - but I work as a live in carer - which can be demanding physically, emotionally and mentally.
Sorry you are having a dilemma with your work, the stress of being there for someone else especially when you are so ill yourself must have been taking a huge toll on you. Could this stressful situation have contributed to your pmr? I know stress has certainly made my pmr difficult to control. If you are in UK talk to someone who can advise you on claiming benefits short term. (no offence intended) best of luck
Thank you for your concern. Yes definitely - my last client in a very large Manor House and then a few events on holiday.
I am a new immigrant to the UK. Do not have a place of my own and so stay with family and friends at the moment (which really is fine and they are so kind to me). Have got dick notes from Dr and have have received benefits - limited though as based on my contribution to National Insurance. - gratefully though it covers my food and travel. 😊
Good at least you are getting something. Your family sound lovely. Try not to rush getting better, it rarely works, or worry about things for a week or two, and see how things go. Good luck.
Hi PMRpro I read your post above and might try taking pred in the evening as I have pain early morning and feel dreadful by 6am. I now understand why I feel awful first thing. Your insight is invaluable. Thanks. ps enjoy you chilli chocolate, it's a lovely comforting legal substance lol.
From what I understand about this disease you are tapering entirely too fast. However that being said I got stuck trying to get below 11 mg and what finally did it for me was splitting my dose taking a majority of my dose in the morning and saving twould mg to take in the evening. So you might give that a try
Oh right. I have switched today to taking my meds after supper. I hope that will work for me. Will keep in mind splitting the dose though if need be. Thanks
Souds like a very well thought out idea Amkoffe , perhaps I can persuade my doc to give me 1mg tabs instead of 2.5mg along with the 5mg. Time for me to start telling him what I think might work for me, especially since the disastrous drop down to 12.5mg. Been on 15mg for last 3 weeks, slowly feeling better. Thanks for the idea.
I'm sorry MeggieKy I forgot you are most likely in the UK. I'm in the US. I don't believe the 1mg is available in the UK. But you can get close by simply breaking a 5mg in half.
Thanks PMRpro, thought I'd seen UK posts saying as much. As we say up here in Lancashire On it on it car bonnet! The very thought of me jumping on anything at the moment is making me ache all over...
You are likely to have a bit of difficulty asking for 1mg gastroresistant pred if that is what you need - they haven't been available for long so both GPs and pharmacists may not know. This is the data sheet
Thanks for that, on non coated at the moment, and thank you for the data sheet.
I can imagine your husband saying things that don't on the face of it make sense. ..we Brits love making up phrases. Though some have meanings from long ago, like 'no room to swing a cat' not a real cat but a whip called 'cat-o-nine-tails' horrid thing. Now I'm going t'foot of our stairs..
Thanks Amokoffee, will check out availability in UK , have already tried to break a 2.5mg to get 1.25mg but even that at the moment is too much. By the way it's great being able to chat to fellow pmr 'experts', as we all will be by the time we are over it. ..ironic or what.
Talk to your doctor about your pred. medication. With a combination of one,two and a half and five mg tablets you can go down in 0.5 mg steps. I am using the Dead Slow Stop method I found out about on this forum and I am slowly working my way downwardso in 0.5 mg steps, but it does take time. Good luck on your journey
Love the name. I have Weightshifted too - used to have large thighs and derrière and small waist and now not - quite nice - except for the gain on waist.
My last prescription (Thus just week) - he did actually prescribe 5mg, 2.5mg and 1mg. So I should be able to do that.
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