First of all, I’d like to make it clear that I’m absolutely not under the kind of stress or pressure that many people here are - touching wood, I’m not moving house, don’t have very ill family members etc.
However….I have an accumulation of semi-positive yet demanding calls on my time and energy. These involve both daughters, both grandsons and a new baby due in a couple of weeks. It doesn’t feel right to put the details on here but suffice to say I am always on call, and am physically caring for grandchildren about three days a week. In addition I have two severely ill friends who I am trying to support.
Anyway, enough of all that!!! My question is, is this kind of emotional and physical stress likely to affect my ability to reduce my prednisolone dose? I’ve been on 12.5mg since mid October so am due really to taper down. It’s the second time I’ve got to 12.5mg - I started to flare in late August (I think because of the same pressures), so went back up to 15mg and then tapered down in late September/early October to 12.5. I feel quite stable now 🤞and feel I’d be able to reduce dose if left to myself. But I never am left to myself (and I wouldn’t want it any other way).
Does anyone have any advice please? Is it worth just dropping by 1mg for example, if I can, or try rheumatologist’s advice to go to to 10mg? 😳Or in my shoes would you call it a day and leave it until after Christmas?
Many thanks in advance x
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If you feel relaxed and OK you could always try dropping 1mg. If you feel in control of your stress that should be fine. I think there is good stress and bad stress!!
The short answer is, quite possibly! I won’t bore you with the long one but the medium answer is everyone has their threshold but that sounds a lot. Most of us with these two conditions have a habit of wearing a cape and doing things for everyone else and for many it’s their identity. To stop that can be very hard. If one of your friends said, “I have a systemic illness that affects the blood supply to my muscles that needs a powerful anti inflammatory drug that has a wide range of side effects”, you’d drop everything and run out to the shops for them. This is you. You’ve flared once, so if you flare again, I think the writing really is on the wall and you need to redirect your efforts inwardly. Others on this forum have had the same demands from childcare that has not abated for the illness. This can be because the PMR person has not really fessed up to the truth of the situation for a host of reasons, not least because they don’t want to let people down or they want to feel capable and alive. It’s horrible to say, “I can’t” if you are a doer. Sometimes the parents really need to think outside their frantic treadmill of trying to keep it all spinning (been there) but won’t unless they are given a reality check. So, this has the ring of being unsustainable but only you know, though I would listen to your body right now rather than anything else. Oh dear, if this is the medium answer I dread to think what the long one is.
The truth is I agree, it isn’t sustainable at this level, but I’m hoping things will calm down once the baby’s born (😂) as the new family will want some time together- won’t they?!? Also I will have to have a cataract op in the new year and that entails 10 days self isolation beforehand and a few days recovery….so I won’t be available then….
I love my family and want to keep going, but yes, I do have to listen to my body. Maybe the 1mg reduction might be achievable?
I have made a note of your brilliant, succinct sentence re PMR beginning " I have a systemic illness ..." for future use when I tend to trip over my tongue and people's eyes begin to glaze over as I struggle to explain what's wrong with me. Many thanks !!
Dear Drsetlady I will like to have advice from you, my wife 71 gca had drop to 9 mg from 6o mg with actemra in 4 month , but she got flare so increase to 10 mg , and than to 12.5 as advice by dr , Stillnow she has no relief , should she try to go to 15 or 20 mg as dr may not available by next week.
If I were her, I would try 15mg, it’s more in keeping with the usual advice given for flares. Hopefully that will help, but it does take a few days to kick in.
She has reduced very quickly, I know she is on Actemra, but at only 4months in her GCA is very prone to flare. If the increase does not help, unfortunately she may need to go higher.
I think you need to discuss with her doctor when you can and once this flare is under control, agree a less rapid taper of the steroids.
If you’re having to physc yourself up, maybe you should leave it a bit longer….…your Rheumy might not be happy, but it’s your body, your life, your PMR…not his! What he reads in a book, doesn’t relate to real life. 🤨
The thing is, there’s no run of days when I can afford to be stiff and aching, or even more fatigued than normal - am looking after four year old this Saturday for 6 hours, plus a few hours after school on Monday and Tuesday, going to London Wednesday to be ready to look after two year old on Thursday …. When I write this down, I can see I’m asking far too much of myself 😟
You ARE asking too much of yourself. Not sure how old you are but I was struggling doing that level in my late 40s with small grandchildren living in central Scotland when I lived in the north of England and they were ill so mum had no childcare. I only did these emergency calls (apparently dad'smum didn't appreciate that and complained it was my turn now!) but I couldn't have sustained it week after week as you are. And I bet I was at least 10 or 15 years younger than you are!
Hi PMRpro 😊I know I’m asking too much of myself - I’m 71 and it would be a struggle even without PMR. I didn’t have my girls until my mid 30’s and they’ve done the same, so that’s how it goes…..and having been in the support role as a grandparent, you’ll know how easy it is to get sucked in…..and if I’m honest, it’s a joy to me, one I don’t want to have to give up. So compromise is going to have to be the plan 😊
You are older than I am - I couldn't do what you are doing. Did I notice you have struggled with sleep? I honestly think that is far and away the worst thing for us now. We just can't compensate - and no-one at any age can catch up on sleep, a study has recently shown that.
Yes, I definitely need to get more and better sleep if I can….so difficult…..but I have to say that sometimes the children exhaust me so much, I could fall asleep standing up!
I know where you are coming from and now there are great grandchildren!! But I have had to say no - I can no longer hold a baby securely, can't play. If I did I would be like you are saying 'falling asleep standing up'. That is not safe for the child you are looking after. I'm 79 with an ill husband, so now my priorities are looking after him and myself to keep on caring for him. Some things you just have to let go of and think of YOUR future. They may not understand but you have to be firm. What if you have a stroke? I did, completely out of the blue - that was the 'wake-up' call! Good luck.
I know I need to be well enough to care for the children properly, but with the help of pred and good planning, I feel I can just about do this at present. I’ve had a lot of illness in the past, missed out on quite a bit, so now I feel the need to do what I can.
My husband and I do think of our future, well we do a bit, but the thing is, our future kind of is the children! It won’t be forever, though, and the minute I judge myself to be unsafe, that’s the time I’ll stop.
Many thanks and I wish you and your husband well 😊 You’re right, I could be in your position tomorrow!
Its actually really tiring looking after children in many ways. It's a big responsibility and you have to stay so alert. The trouble is it's really hard to say no. Your family may have to try to find other routine childcare answers and then you can just help now and then. Not easy I know but then neither is PMR ! Very best wishes to you.
Yes, it is really tiring! I don’t really do a lot of routine childcare other than school pickups - these ‘pregnancy support’ London visits will change once baby’s born. It’s just been a lot to cope with these few months….will recalibrate, honestly, once things settle 😊
I had written a reply but navigated away and lost it! Snazzy's reply is far more eloquent than mine but I'd echoed a number of her comments. I'll continue by saying that there is bad stress and good stress and either or both will affect your PMR. If you could reduce some aspects of the pressures put upon you (I can hear you saying that you aren't under pressure) I'm fairly sure that you'd have less of a problem in tapering your Pred. You need to think this through and have that talk with your family.
I've read an earlier post of yours where you mentioned your sleep hours are low. This can have a detrimental effect on your well-being and your PMR and I would suggest that you mention this to your your doctor if you have tried all the usual remedies like switching off devices a couple of hours before bed, no caffeine, meditation (don't knock it 😏), a warm bath, etc.
I agree that I need to reduce some aspects of the pressure - in fact I guess that’s what made me start this thread. I kind of know some of what I need to do, but I need other people to give me a nudge, otherwise I’ll keep putting it off!
I have actually begun to make some adjustments, eg asking my daughter or husband to pick up or drop off the four year old sometimes, so that I can concentrate more on the chatting, teatime, reading, board games etc. I used to play football with him quite a lot but even at his age he’s beginning to adapt too - he’s realising I can’t run or tackle etc so I’m always put in goal now - and tend to let him score! 😂
And ….I need to be a bit more honest with family 😟
Re sleep, you’re right, I am terrible. I’ve tried all the things you mention re devices, meditation etc (which incidentally I love). It’s in my mind to discuss with doctor. But…..the more I do with children, the happier and more tired I am, and the better I tend to sleep. Thank you for raising this, it’s very important.
“And ….I need to be a bit more honest with family”…
Yes you do!
Many people on here have been in the same situation as you…the “go to” mum/ grandma, who always been happy to take on childcare - but you now need to take care of yourself.
Unless you tell your family, they do not/will not realise how much this is taking it’s toll on you. I know you enjoy your grandchildren - and that’s fair enough….but all things in moderation- and at that moment it doesn’t sound to me as if it is.
Sorry if this sounds harsh….but your children are responsible for their children’s care - not you. Grandparents are there help out occasionally, not take as much responsibility as you seem to be.
You’re right DL, I know you are! There will never be an easy moment to say, sorry, I can’t do that, but I really have to, in all our long term interests. It makes me sad, but there are many, many worse things in life and the issue has to be tackled 👍
This weekend is probably not the best time, being as it is, a matter of days before the new baby’s born….and it’s been a very difficult and high risk pregnancy. But broach the subject I will, and sharpish! Thank you 😊x
Yes you do have to pick your time, and it will be a difficult decision/conversation, but to be fair to ALL the family, they need to know the situation.
As has been said many, many times, because you don’t appear any different on the outside, other people don’t know what’s going on inside.
You can still enjoy your grandchildren , but on your terms, and actually it becomes more of a pleasure when it like that. 🌸
Agree completely. I told my daughter from the start to NOT use me as regular childcare, but to use me as child emergencies. I knew I had to get it out before the baby even arrived as otherwise I'd be stuck.Before they went to Hong Kong I had her a lot, but it wasn't a regular commitment which is what I really didn't want to be tied to.
Me too - though my role was what my daughter wanted and needed. She felt it was her responsibility to arrange ongoing care and not take me for granted/overuse my services but keep me for emergencies. I was working - a freelance translator with very irregular hours, but equally that made me adaptable - and my clients had to be at the top of the list or my income would just disappear.
I hear where you’re coming from, but actually I find regular care easier to manage, as long as each session doesn’t go beyond a few hours or perhaps one overnight. I find I can plan these predictable sessions so that I’m much less likely to be faced with sudden demands on my health that I can’t deal with. I can get the jigsaws, books, paints etc ready and hope I don’t have to do too much!! And have the next day to clear up (usually).
Anyway that’s just me - everyone’s level will be different 😊x
You may well find that your family will totally agree that you need to ease up and you will find that you've been fretting for nothing. You sound a lovely, caring lady. Your family will still love you even if you can't be Supergran all the time. 😆
I certainly hope that’s how it turns out 🤞They are pretty realistic, actually - I think to some extent they ask me to do things because they know I want to - they’re lovely girls and we should be able to work it out xx
I'd call it day until next year!!! But 1mg at a time is ALWAYS preferable. If it works, you can try again, if 2.5mg doesn't work you are no better off.
But ANY stress has a habit of needing a bit more pred - doesn't matter what it is. Yes, good stress, bad stress, but stress is stress. Snazzy has said the rest.
We’ve had a builder in for a few days this last week doing some essential work and I found it absolutely exhausting!! Honestly I felt jet lagged 😳 Realised of course that pred is what it is, it copes with a ‘normal’ level of inflammation or stress. Doesn’t adapt well to new circumstances or allow us to be as flexible as we’d like…..🤦♀️x
Okay, so on the basis that there are no silly questions…..!
I am wondering whether it might work out to reduce by 0.5mg for three weeks, then if that works out, same again for the next three weeks etc. If any problems, I’d just go back to the previous dose…..
In this way, I might get to 11mg by mid January and 10mg by the end of February. IF I get that far, I’d then go on to DL’s slow taper, or PMRpro’s DSNS plan…
The main reason for this is for simplicity in packing my dossett boxes, which I have always liked to do a couple of weeks in advance, and which I need more than ever with popping up and down to London!!! I find it hard to imagine following a slow taper with all the coming and going with grandchildren, Christmas, husband’s 76th birthday etc, although by 10mg I’ll need to adapt to one I think. Hopefully by that time, some of this (often lovely) chaos may have abated….
Does anyone have any views on this? Many thanks in advance x
Yes it does make sense…..and if it works then great, because you feel as if you achieved something, A very small successful decrease is much more rewarding than a bigger one that fails. But to be honest in the great scheme of things a few weeks here or there is nothing…so don’t rush.😊
Sounds a much better way to proceed - if it works, great, if it doesn't, don't worry about it for the moment.
But you know - I suspect you aren't really factoring in how exhausting travelling back and forth is. Yes, we did it 5 years ago - but my two were pointing it out when they were here. I have a friend our age in the NW who has to go to London regularly because of a frail mother who insists on living alone and won't consider moving - it is the journey that she finds hardest,
That's exactly what I did in the end as tried a few times to get down from 12.5 and failed on each attempt. So I changed tack and did .5mg reduction but slowly with DorsetLady's plan. Am now going from 9 - 8.5 and not sure this one is going to work but I'm only coming to the end of week 2 so am trying to stick it out with some symptoms I'm having. Far better to do it successfully really slowly, especially with your busy diary. That way you won't be worrying about how you might be with your grandchildren... I so know the pregnancy complications part, oh dear, that doesn't help at all. Hope it all goes well.
“That way you won't be worrying about how you might be with your grandchildren.”
Absolutely! It’s all about being capable of looking after them while at the same time gradually managing “the drop”. IF that proves to be possible! If it doesn’t, I’ll have to prioritise my own health, for everyone’s sake x
That's a tough one isn't it. I can talk the talk because my daughter isn't in the country. When she does come back, I can't say I will absolutely say no, but hopefully she has got a good enough idea by now how I can be from day to day and will take that onboard.
I started going down by half a mg after endless flares. It certainly helped me. At very stressful times I either don't try and go down (despite the plan), or have a trial once a week for a few weeks to see how the body reacts. I am doing the travel bit with stress heightened too and do pack up dossette boxes but also take my 'dose' calendar knowing I will forget if I ever needed to make adjustments. I carry plenty of spares in a different bag, too. Now that I am on 5mg (trying to head to 4 1/2) I carry some on my person with my steroid card.
I suspect in your shoes, I may delay next taper until after Christmas. Either way, good luck!
Thanks for the practical advice herdysheep 😊 I generally travel with 2x7 day dossett boxes, spare boxes of everything, a prescription and my steroid card……I fit clothes in where I can! I have a bag permanently packed for emergency trips but these will hopefully become fewer as time goes by. (They’ll have to, I won’t be able to keep it up much longer….).
Hi, nice to 'meet' you. I'm not one of the experts on the disease side, but like you I've had trouble getting below 12.5 , every time I hit 11 I flare, but I was thinking from the childcare side ... can you possibly box clever and plan those lovely times so you build in activities that allow some physical rest ? I'm know what it's like to love doing something and to get carried away , especially with little ones, so you dont notice the energy drain at the time. I'm thinking if the child was hurt and physically limited you'd put time into planning and insisting on a balance of activity stuff and seated, restful but fun things. So do it for yourself. Actually put time into listing the least tiring things you can do, and plan in a balance, or even a predominance of those. Maybe explaing why you're doing this would be a way into starting the difficult conversation. And show them what the wonderful knowledgeable contributors have said on this thread. Good luck.
Hi I’m no where near as qualified as your other answers but looking after the grandkids I get. I’m 67 and if mine were little now I could not do what you are doing. But it’s like family events allI think is I hope I’m ok on that day and feel
Awful guilt if I don’t think I can make it. But out of the blue my son called me and said mum will you pleas just slow down and put yourself first. We don’t want to see you suffering and then when on to help me make a bat I can
Recovery plan. The relief that he finally understands I do know was down to my wonderful daughter in law paving the way. But now that’s what I intend to do. Sort myself out
With an easier plan for recovery. Sometimes they already know how you are just takes a while for the penny to drop. Good luck x
Well, I’m overwhelmed this morning by all the wonderful replies on here 🤗 I know it’s been said before but up you are such a lovely, perceptive, caring, practical bunch of people. Will absorb all comments and suggestions later (bit busy right now) but for the moment can I just say thank you all so, so much 🙏😊xx
Just to add...a locum GP, a couple of weeks ago, said two very encouraging things. I was discussing the wisdom or otherwise of tapering now from 5.5mg to 5mg (having gone back to 5.5 a few months ago). She said "I am thinking of your quality of life" and "I want you to have a good Christmas" - and she suggested I stay on 5.5 for another month. What a helpful attitude - for us all, I think. I have a certain amount of stress in my life - and my PMR knows it! 😀
To be accurate, she's a registrar - so a qualified doctor doing her GP practice. Thus, as I keep saying, recently trained is likely to mean up to speed on PMR. Hurrah!
Hi, I can so relate to your situation although my grandchildren live too far away for me to be on permanent call. I long to be able to do everything that I could before this illness took hold but I’m now realizing that I have to put myself first sometimes. I’m the same age as you but mentally my brain thinks I’m 20 years younger. We love our grandchildren so much and it’s hard not to take too much on. Re. the steroids, I couldn’t manage a 2.5mg taper and had relapses. Even 1mg is too much for me. I cope much better with the .5mg and even that reduction gives me issues! Try and get some rest and think about doing the smaller steroid reductions. Take care, Tiggy70 x
As I look at all the replies I am struck by the fact that no one has mentioned Covid. Our neighbours who are the same age as us have at least four cars with friends and family members here to celebrate a birthday. We cancelled going to my granddaughters party today because the infection rate is so high in my county. Am I being too cautious? I know I have no antibodies from my first jabs, hoping third will work. I was feeling sad about tonight and now reading about all the contact people have with family makes me wonder if I am being foolish and missing out.
No, I think you are being sensible especially as local rates are high. Too many people are just assuming because they have had their vaccines, everything is okay. It may be safer for some people certainly, but not for everyone.
I think you are being sensible - it is people behaving like that that is keeping the figures so high. Particularly since in the UK there is not enough use of masks. And it is being said here that a big part of the European 4th wave is the spread of Covid via children, especially with the delta variant which has its own set of rules. The jab should stop you becoming seriously ill - but it neither stops you catching Covid nor does it stop you shedding the virus for a short period of time and putting others at risk.
I’m sorry you can’t go to your granddaughter’s birthday and I certainly don’t think you’re being foolish x
I have withdrawn from the childcare on a couple of occasions recently, once when the four year old had his live flu spray, and once when the younger one had a bad cough, conjunctivitis and D &V (Covid test subsequently proved negative). And we don’t have any big gatherings inside, it’s generally just me and the children at home, with an occasional brief foray to a park or library (mask on). Not foolproof of course but I’ve tried to strike a balance. Not easy as when they’re ill is exactly when I most want to cuddle them…..🙄
I hope you find some lower risk ways of keeping in touch.
I understand your feelings. I admitted the other day to feeling more 'isolated' during the last few days than I ever did as friends are telling me about their Christmas arrangements. However, this was fairly fleeting when I reminded myself that Covid is still all around us. We have to do what we are comfortable with. Perhaps next year?? 🤞🏼
I sympathize with you. Firstly I do not agree with "good" stress versus "bad stress" It is all stress . I am now sown to 4.5 mg have been for months and hesitate to go lower. I am at my best in the mornings, I get up about 5a.m., but after lunch I rest for several hours to avoid physical stress and I put as much as I can in the hands of my daughter and one of my sons. I believe we have to accept there is a limitation on each one of us which varies from person to person. Find your limit and say "this is it!" Hope it works out for you
I do believe in good stress and bad stress generally, but in the case of PMR and pred, unfortunately there isn’t much difference - both put stress on the body 🤦♀️x
“I believe we have to accept there is a limitation on each one of us which varies from person to person. Find your limit and say "this is it!" I absolutely agree with this 😊and I’m still finding mine…..
I think I must have known in my bones that something was imminent….
Daughter went into labour this afternoon and was blue-lighted to hospital by ambulance. She had an emergency caesarean, thankfully successful, and now has a lovely little baby girl 🥳 No name as yet……more to follow tomorrow I expect.
Thank you everyone who has replied on here, I so much value your support 😊
Wow, what a thread. I feel there is a novel waiting to be born here! First of all, congratulations to all on the arrival of the new grandchild. Second, never ever consider tapering by more than 1 mg at a tme, and once you're at 10 half a mg should do it. Slow taper plan always. Third, I recently read about a a way to get to sleep and have actually had occasion to use it once. When we can't sleep the natural response is to try to get to sleep. This method says, try to stay awake. You aren't getting up and doing stuff to stay awake, you're lying comfortably in your quiet, dark bedroom, telling yourself you are going to stay awake.
The way the thread has developed feels amazing to me too, illustrating as it does the way so many people are fighting their own quiet battles, living their lives and loving their families and friends in the best ways possible, despite the limitations imposed by illness…..
I feel so supported by everyone here, words are not enough (someone else would have to write the novel!)
Don't we love our children and grandchildren? Please remember to love yourself too. There are so many compassionate and wise responses to your post. Be kind to you~!!💖
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