I've been on 3mg for 6 weeks and ok apart from stiffness in hips when walking. My legs feel like prosthetics but no pain. I do physio exercises to strengthen gluts) . When I know I have a stressful day coming up like driving 30 miles to care for a friend on her own with pmr and a very painful hip and knee , is it ok to go up by say 1 mg? I have to shop, get things for her from upstairs (told her to rent a stair lift asap as she's stuck sleeping in a chair), do lunch, wash up and dry, put out rubbish, do tea then drive back. Doesn't sound much but I was totally shattered and today too. I go to bed late afternoon for an hour daily to get through the evening. Also, when a friend comes to stay for 4 days with all the work that entails, is it ok to go up, then drop down again? Or does that upset the adrenals. I'd like to be on 2.5mg by Easter but the fatigue is hard having also had loads of energy before pmr 6 years ago. I have rotator cuff and and trigger finger and having cortizone injections on 23rd.
Increasing by 1mg occasionally? : I've been on 3mg... - PMRGCAuk
Increasing by 1mg occasionally?
It really isn't a good idea to yoyo your pred dose as a means of coping with more physical activity since the pred doesn't really do much about the fatigue of autoimmune disorders - it needs to be managed by pacing and resting and lifestyle adjustment.
healthunlocked.com/pmrgcauk......
If I have visitors for 4 days it doesn't entail much for me - they have to pitch in too and only the real necessities are done. They must help with the bedding at both ends if the cleaner doesn't happen to coincide with when that is needed (she only comes for an hour a week). We eat out or have very simple meals. And if that isn't good enough - there are plenty of B&B options here. The upheaval of simply having people around is enough without waiting on them too!
Thanks. Yes, I thought that would be the answer! But well before Christmas I took 5mg for some reason and no stiffness getting out of the chair at night and could move so much more easily. But I won't do that again as I can manage on 3mg if I don't do too much. I'm lucky as my OH was at sea and is very house trained and fit.
Ah - now THAT suggests that the 3mg is a tad too low - now whether that is for PMR or for adrenal insufficiency reasons you can't tell since a lot of the symptoms are very similar. Personally, if I were that much better at 5mg I would take 5mg - it is still a low dose and quality of life is all at this stage of life. It really is.
Is 4mg all the time significantly better? Do remember that you are 6 years older - I know how much I have "aged" in the last 2 years, never mind 6, and you cannot expect to get back to the level of fitness you had pre-PMR and pred. It is always a mistake to set your heart on being off or at a given dose of pred by a certain date - because it rarely works and you go through a lot of heartache, missing out on things in the meantime as a result.
Do think about it. It almost certainly the pred CAUSING the fatigue - but the lack of it. And probably worth talking to your GP and getting a basal cortisol level done while you are at 3mg - to see if a synacthen test is going to answeer anything.
Thank you Pro. Yes Ive6 had the synacthen test. They said levels were fine. Don't expect to ever be off pred so not rushing anything. Old age stiffness perhaps! Big difference betwern 72 and 78.
Hi Diana 😊
I do understand where you’re coming from - I got myself in a similar situation last year when my pregnant daughter needed a lot of help. She lives about three hours drive away - and I also look after our five year old grandson, who lives near us, two days a week after school. I was frankly doing too much, couldn’t taper my pred, and like you, ended up taking an extra 1mg here and there. Finally I went up an extra 2.5mg just to keep going. It was not good for me!
I think it’s a real problem when we really want or need to help people we care about. All the more so, if you were an energetic person before PMR, and people not only expect action from you, you expect it of yourself.
However, I did eventually listen to all the good advice I got on here, and have started to accept that I’ll be no good to anyone, if I don’t look after myself. As PMRpro suggests, I’ve cut down on what I do, and if I’m not up to things, I say so. I don’t like it, but at least everyone knows where they stand …..and touching wood, I am now slowly reducing my pred dose again, which really is so important in the long run.
Think about what you do for your friends. Can you rationalise things so they’re less demanding of your energy? You are so close to 2.5mg, and doing well on 3mg, I’d say don’t blow it now if you can help it.
As a compromise, you could maybe stay on 3mg a bit longer? The main thing is not to go up and down so your body can never get adjusted.
I hope this helps and I wish you all the best 😊xx
Thank you. I've already turned down a trip to Scotland and my friends know about my pmr even if they don't understand it. They probably think it's all put on! Even my OH doesn't understand it and thinks it's the steroids causing the fatigue etc. He'd like me to ditch them and I'm constantly explaining why I can't 😡😡😡😡
Ah, not helpful to be surrounded by people who don’t understand 😟 And especially difficult when your husband isn’t sympathetic. I would find that very hard. My hubby doesn’t want to know the details, but at least he takes my word for what I need to do/ can’t do….
There’s a post in FAQs which is specifically aimed at friends and family, to help them understand. I wonder if you’ve seen it? I’ll have a look and see if I can find it, in case it helps….
Hugs xx
Thanks. Don't get me wrong. My Valentine is wonderful, just doesn't believe in drugs. He's cooking a surprise lunch tomorrow ❤️
I’m glad he’s wonderful 😍🥂 x
He’s also lucky to presumably not need much medication himself….we’re all different, vive la difference, as they say 😊
Toughest 82 yr old wonder. No pills, busy digging over large veg plot. Very active. Super ironer. He's so lucky healthwise. He won't let me touch the iron, says I'm not good enough at it 😂🤣
Ask them to do some research abou the disease so they can understand. My daughter does this all the time. Even if my GP recommends some treatment for another problem she researches in places like Mayo Clinic so she knows about it and can adjust to my problems. When we travel together she understands what I can and cannot do. Best wishes.
Think you might be sensible to go up a little anyway - sounds as if you are only just controlling things on 3mg.
You may want to be at 2.5mg by Easter, but if your body says no, it’s says no!
No gold medal for getting to 2.5mg and being a complete wreck……quality of life counts more.
Yes but it's so galling spending weeks getting to a low dose only to go back up again especially as I've no pain and bloods normal. I'll see how things go but really appreciate everyone's help.
It is galling, yes, which is why I think you might be better off staying at 3mg in the circumstances, just for a while. Hopefully things will settle a bit and then you can start on the taper to 2.5….
👍👍👍
“and ok apart from stiffness in hips when walking. My legs feel like prosthetics”…
That sounds a bit PMRish to me which is why I suggested that 3mg was not quite enough….doesn’t have to be full blown pain.
It may be galling to have to go back up, but it’s not recommended you use Pred as you suggest.
But as you say - see how things go.
I've always felt stiff in the legs with pmr but ok once I get going. I have a tilted pelvis which doesn't help. I'm really good at sqats advised by the physio to strengthen the gluts! I think lots of normal oldies are stiff after sitting or getting out of a chair. Perhaps I should go back to 5mg for quality of life. Then I could run around like a spring chicken and have more energy. Oh the complexity of life.....
Your choice of course, and not advocating you take more Pred than necessary but OTOH why suffer by taking too little.
Will give it a whirl as an experiment.
I suffered badly at 3mg last autumn. After 3 weeks I grudgingly accepted my doctors suggestion & went to 5mg, & stayed there two months. Now reducing by 0.5mg & down to 4mg, but without the bad symptoms from last year. I’d like to get off them quickly, too, I think we all would, really!
I'm fully resigned to always be on steroids albeit a low dose. Lots of people are addicted to sleeping pill etc so never mind eh!
Between the Pred and the sleeping tablets, know which I’d prefer…
I agree…but I put on 2 stone during the chest infection steroids years…and another two stone during PMR! I vote we take neither, & when I work out how this is done, there will be the happiest post ever!!
I spoke to my retired physio friend in Scotland. She said she's very stiff when getting out of bed and up from a chair. Doesn't have pmr, says it's called Old Age!!
I’m only 65, so thought I had a few years left before I felt that way!
I remember being told that over 50% of people over 55 are unable to stand from sitting without assistance of some sort - using the arms of the chair counts. I found it quite astounding at the time - I was in my early 50s but experienced it with unmanaged PMR. At nearly 70 I am pleased to say I can still stand from sitting without trouble - even from a relatively low seat.
That surprises me!
What surprises you? That PMRpro can stand up unaided, or others can’t? 😂🤣
Oh, whoops, sorry! No, I can see that PMR Pro keeps pretty active. She tells me of her walks round the village, & she was very actively caring from her husband. I wasn’t at all surprised by that..My surprise was that 50% of 55 year olds can’t get up from sitting totally unaided! I don’t think my parents fell into that category until Mum passed away, really, & until my Dad was over 90. They both kept really active, Dad used to do the kitchen carpet with dustpan & brush daily, etc etc.
Thought they’d what you meant, but just checking!
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