I was diagnosed pmr in late December 2018 and am feeling physically ok. I can now manage a gentle exercise/aerobic class at the leisure centre 3 times a week as well as a walking group and ballroom dance class once a week. I started on 15mg and am now just down to 9mg Pred.
The only thing is for the last few days I have been feeling a bit low and have no reason for this. I am enjoying retitrement, have a short break to Spain next week and no real family worries so am wondering if this could be Pred related as I know it's a side effect for some.
Could it be because the Pred has now built up in my system and that's why I'm only feeling it now?
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Candydog
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Could be pred related, but not because it's built up in your system (I don't think pred does that) but because you are getting very close to the level of cortisol your body produces normally and your adrenal glands are going to have to start picking up the slack. Cortisol can affect mood I believe. A lot of us find things feel a bit different as we go into the single digits with our dosage: maybe increased fatigue, or a vague sense of inexplicable panic, or blue mood. This too shall pass!
Certainly if nothing else my PMR/pred journey has taught me patience! You've done very well with your taper so far, and as you recognise it's likely time to slow down a bit you should continue to do well. Oddly enough I find I need colour in my life more than ever.
Yes, you’re definitely right about needing colour. I find dark colours make me feel low. Even black cars are miserable. I’m going to see the tulips in Holland next weekend, and I can’t wait to be surrounded by their spectacular colours!
Hi Claire, we went to Keukenhof, lovely gardens and displays indoors too. In the afternoon we hired bikes and rode around the area , saw the fields of tulips there. It was a lovely sunny day, hope you have good weather too. We'd booked online for AF house, I'd wanted to see Van Gogh museum too, but hadn't realised we needed to book that beforehand, as was sold out for two weeks when we were there. You may already be organised, but if not you may want to research and book ahead.
Gosh, you’ve got me excited now! I’m going with a good friend. I went to the AF house many years ago and we just wandered in. There wasn’t even a queue, but that was many years ago. Thanks for the info. We’ve got Keukenhof on the Saturday then Amsterdam on the Sunday. I’m really looking forward to it!
Regarding feeling down, I identify with you. It’s a feeling of misery and sadness when nothing’s really set it off. I put it down to the steroids. They also make me tearful, which is annoying as I’m not usually a tearful person. I just go with it now though.
I hope you have a lovely trip to Spain.
Take care x
Hi Candydog
You’ve done very well so far & as you're now on 9mg you’re getting close to the Physiological Dose we need to keep us going just in general.
You are achieving quite a lot & that’s really good, you just may be a bit short of enough Cortisol to achieve everything & that’s why you’re feeling a bit low.
You could go back to 10mg & drop by 0.5mg each time now, as ideally we shouldn’t drop by more than 10% of the current Pred Dose.
My other suggestion is not to give up your classes, dancing or walking just pull back, instead of 45mins do 40mins just allow some of your energies for other things, it’s easy to get carried away when you’re doing/feeling well but that 9mg has to last you all day until your Adrenal Glands start kicking in again.
If you don’t pick up then maybe consider a chat with your GP about your mood in general.
Thanks for your advice MrsNails. Yes, I think I'm going to have to take things a bit easier. I hadn't realised that I could be short of cortisol as I hadn't been experiencing the pain and stiffness like when I first started.
Well done Candydog you progress is amazing in the time.
But sometimes we can do too much and the tapering below 10mg can bring on Fatigue.
One of the first signs of that Fatigue is often " feeling low" the emotional gloom a warning sign to help you pull back a little on the activity and givecyou body time to rebalance and repair before you taper again.
A few less classes a week , or rests during them , and maybe over the next week conserve your energy to prepare for that much deserved trip to Spain.
Hi Candy dog. You have done very well to taper from 15mgs to 9 mgs in just a few months and keeping going with all your activities as well. So far so good, but this can be a roller coaster of a ride. Up one minute, down the next both emmotionally and physically. What you are experiencing is the norm, no rhyme, no reason. My advice is not to try to analyse the whys or where fors since there are no answers, just go with the flow as the ride takes you. All the best.
Pred doesn't really build up in your system - and you are doing really well.
This time of year doesn't help - I wrote about it a bit back, spring fatigue they call it! Your body has to catch up with the changing temps and weather and add in a change in pred dose and it can be really rubbish!!!!
You just have to rest a bit when you dont feel good. Do the things you are enjoying, but remember your candle isn't very tall at the moment so burning it at both ends may just use it up more quickly.
As soraya says....build in rest. Whether thats a day or a couple of hours in everyday when you sit or just potter. Physically i have found i need one day on, one day off but the day off has a little laying/sitting and pottering. The days on involve being outdoors for a chunk of the day. A bit of fresh air and nature blows the mental cobwebs away too!
Are you fitting in rest periods around all the activities?
Or maybe dedicate one day a week to doing nothing. I try to have my ‘do nothing’ day on Monday, as weekends can be a bit busy here with student changeovers. If I don’t get my rest day, my week’s not so good.
Hi Poopadoop and Soraya, thanks for your advice. I do usually build in rest times after my activities, but have been spending a bit of time stripping wallpaper so may have been overdoing it. I thought I was ok as had no physical pain and hadn't realised it could also affect how I'm feeling. I'm going to the shopping centre for a few hours today so will make sure I have some coffee breaks for a rest. A bit of retail therapy will cheer me up!!
Oh yes, wallpaper stripping would do it, especially if you’re stretching upwards. PMR arms do not like ‘up’ IME.
And yes, when you ‘force’ your body to do too much, it will have knock on effects, for you one of them is maybe low mood due to extreme tiredness. Keep ‘forcing’ and you’ll meet the deathly fatigue sooner than you expected! Then you’ll know you’ve overdone it and won’t have any option but to rest.
OTOH I definitely benefit from SOME exercise, and lack of exercise makes me lethargic. It’s a fine line. Have walked my dogs this morning, only a mile and a half, and now feel energised, but I’m sitting with a cuppa for half an hour before I move onto the next activity.
You can get into a state when the thought of getting up from your chair to do things is too much. But you do feel the better for it when you do, plus the satisfaction of achievement 😀.But it is hard to get the balance right darn it!! 😕😀
Hi Thelmarina, yes it's really hard getting that balance right. I want to keep the muscles working (especially as I also have osteoporosis -2.5 on dexa scan), but don't want to risk a flare by doing too much!
Wallpaper stripping as well no wonder you are " Poopadooped"!!
I left a longer message to you as well in reply to Mrs N further up , you have been doing so well , but don't let that new energy make you think you are back to normal yet , more rest .
Hi Blearyeyed, thanks for all your comments. Yes I'll have to take things easier, building in more rest times as I don't want to risk having a flare and needing to up the pred. I'm going to rest tomorrow so feel OK for my trip to Spain and relax whilst I'm away.
You seem to be doing awfully well with all your activities and sociability. I was a complete heap at your stage. I am sorry that the sneaky low mood has descended for no good reason. Prednisalone can do this and because it is not essentially you it can ( in my view) be given short shrift. However, you have been recently diagnosed with a serious systemic disease that has clipped your wings somewhat, you are clearly a doer. There is some grief and loss involved in that and you might be experiencing some of that. You have whizzed down from your start dose, possibly too quickly. PMR won’t be hurried. I would suggest a slow and gentle taper from now on. DorsetLady’s useful plan is posted to the right of your screen. Others make the good point about your Adrenal function, it does contribute to the sinking feelings. Treat yourself gently and have a wonderful Spanish break,!
Hi SheffieldJane, thank you for your comments. I think I was quite lucky in that I was diagnosed after a couple of months of increasing pain and maybe the inflammation didn't take too much of a hold before I started on the 15mg of Pred. After everyone's advice I am going to build in more rests to my day. Will also stay at 9 for a while and then try to reduce by 1mg every 7 to 8 weeks using the slow method ( 1 new dose the first week, 2 new doses the second week etc). If I can't manage that will reduce by .5mg over the same period. Trial and error I think.
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