Hi everyone - just joined this community last night. I’m a pretty active 60 year old. Still working, youngest kids at Uni, elderly mum and hands on grandparent. I’m used to being busy.
I was diagnosed with PMR in November. I was feeling worse and worse from Sept but it took about 3 months for a proper diagnosis. I really struggled to move with terrible neck, shoulder, rib and hip pain. The 15mg of pred was a life saver. I have been feeling amazing - right back to normal. I started exercising gently a couple of weeks ago - restarting couch to 5k and getting on with my crazy life, thinking this was how it would be from here on.
All seemed fine up to Christmas. I’m now 6 days in to tapering to 12.5mg which seemed to go without a problem. Just before Christmas, my daughter came home from uni with the coldy flu bug doing the rounds which I caught. I was feeling a bit rough but muddled through Christmas ok and even managed to work in a homeless shelter for Dec 28th/29th. When I got back last night, I felt absolutely exhausted. I got up this morning to do a big post Christmas house clean but had to stop. I feel so tired, really out of it and slightly weepy which is really out of character.
Reading through your posts I’m thinking that I need to get a bit better at pacing myself and that the tapering, illness and full on Christmas has probably tipped me over the edge. So far I’m not aching like before but definitely not feeling great. I’ve been eating more than usual over Christmas and I’m definitely gaining more weight than normal so keen to get back on a healthy regime of avoiding carbs and exercising. Also suffering with indigestion for the first time in my life. I’m supposed to drop again to 10mg a day in another week’s time.
I’m hoping that with a few restful days I will be back on track again but also mindful that I may need to make some bigger changes to get used to living with PMR.
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Libellule64
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The trouble is the steroids do a great job and lull us into a sense of security, when all they are doing is helping with the pain, they are not curing the illness. The mantra with PMR is rest, rest, rest. PMR is always hanging around in the background waiting to pounce. Lie back, pamper yourself and smell the roses.
You have just about hit the nail on the head 😊.. and you cannot return to life pre PMR/pre Pred no matter how amazing you feel… many have done so, and so will many more, so you’re not alone in that… and it usually ends as yours has..
Have a look at this intro post [quite long so please keep for reference] - has info on pacing as a link and also second post which is about tapering and expands on info in first]
No more tapering for now, in fact might be sensible to go back to 15mg… get back on track and then reduce by only 1mg a time… 15-12.5-10mg might be in guidelines, but certainly not achievable for all..
On the plus side you have realised early on that you can’t pop the pills and pick up where you left off. Not everyone does. We do understand that if you have a busy life, this comes as a real shocker. I was 54 at diagnosis with GCA and also had kids in Uni and an elderly in law living with us. I went to work on Friday and by Monday was goggle eyed on 60mg Pred.
Christmas has probably made the crash and burn more extreme and all the goodies available won’t have helped with keeping carbs low. Dropping to 12.5mg isn’t doable for many and a slower reduction may be in order for you. The trouble with Pred is it can make you feel you have more energy than you really have. You overspend on getting jobs done only to find yourself exhausted. You will get the measure of it but it can be jolly frustrating.
Hi Libellule64, it is dispiriting isn't it but you will sort it out and learn to pace yourself. As some have said, good that you have worked it out this early. Feeling as you do and all that has been going on it seems a bit risky to taper again so soon, especially as you are not feeling so great, a few weeks to stabilise and settle is only...a few weeks!
I learned the hard way, got my pred, felt wonderful the next day and mowed the lawn and carried on as if PMR never happened, that was enough to knock me backwards. It took a while for me to really get it, so anxious was I to get off the meds but in the end it just delays and disappoints. So, good luck with it all, let us know how you get on and , of course, welcome.
Morning L,sorry you had to learn the hard way that life just carries on as usual with the Pred.Afraid it doesn’t as many of us have found out the hard way by being stubborn and thinking that “ Oh I.ll just do that other thing and have a rest.” Got to listen to your body now,it will dictate what you can do.I was rushing around like a looney yesterday morning trying to get animals fed,Wild birds ,and leaving OHs breakfast ready for when I left for hospital at the ungodly hour of 7.30.Walking length of hospital,2 flights of stairs,having procedure then back down to entrance and taxi home,I was absolutely 🤬🤬🤬🤬🤬🤬🤬🤬!Feel as rough as hell today ,so today I shall rest and listen to my body,can’t do anything but that!Hope you get over this episode and are kinder to yourself in future eh?xx💐🍾😜
You've obviously already received the information and advice necessary so I would just like to add that my own personal experience when first diagnosed was similar to yours.
The steroids made everything feel so much better, until I thought I could begin to carry on as normal!
Working, socialising and in some cases even just 'living' at my normal energetic & fast paced level, very quickly brought me back to the new reality of life with PMR, and with steroids!
I couldn't sustain that level of activity anymore without there being consequences!
It was a frustrating lesson to have to learn, but as soon as I could recognise & accept my new limitations, life became more manageable, and I could then begin to be grateful for (and embrace) all the the things I could still do.
I've had PMR for almost 6yrs, but I'm now taking just 1½mgs of prednisolone and continuing to work hard at staying as healthy & well as I can..... and that includes a regime that allows for the time I need to 'rest & restore', and is probably one of the most significant things you can do to aid what is likely to be a very slow, but probable recovery.
I've had to learn to say "No"..... Not easy to do when friends & family (most of whom don't really understand the nature of the condition) are continually asserting pressure to do something, or be somewhere or join in with an activity. Sometimes this has led to minor conflicts, but I eventually realised that I have to put my own health & well-being first, and if some of the decisions or choices I make upset others, then so be it.
Our bodies are actually pretty good at letting us know what they need. We just have to 'listen' to them and take heed of the little signals & clues they're giving us!
It seems you've already realised that you're going to have to make a few necessary changes to your life as you adjust to a new 'normal'.
Don't be afraid to do this..... embrace it. You'll find that you'll feel more in control and more 'settled' if you do.
Thank you. It is really helpful to hear from people who have been through the same experience. I’m finding it so strange and although my husband and family are trying to understand, they just assume I’m back to normal. I’ve always been really active and juggled everything and it is going to be hard to say no.
Thank you for the advice. It is reassuring to know you are all out there.
I think one of the hardest facts to convey to friends and family, is that you can look fine but actually feel really unwell.
Also, just because you feel pretty good one day doesn't mean you'll feel okay the next.
The unpredictability of how you'll feel each day can cause confusion and sometimes even disbelief about the authenticity of your condition! You soon discover who your true friends are!!
I always say;
"I don't expect anyone to understand the intricacies of my condition, but I do expect them to respect my decisions and choices, without question or judgment!"
Just to say I had the same experience as you Libellule64. Within 5 hours of the first 15 mg I thought PMR had gone away. I had no idea what it was then. Luckily I found this community and have not looked back.
Now going into my third year and ever hopeful the PMR will burn itself out. The side effects of the Pred have been challenging, but once understood can be accepted - the weight gain; moon face etc etc. Good luck and keep in touch when you are unsure about anything.
Hi, like you I’m also new to PMR and also like you, although quite a bit older (77), I was healthy and active so the diagnosis in November was a shock. I was lucky - quick diagnosis and started on 15mg prednisolone next day 19 Nov. I need to be in control so read everything I could find and then put this short summary together to help myself get a clear picture and for family so they can quickly understand what’s happening to me:
Right from the start I decided to embrace PMR; I’m constantly ‘listening’ to my body. My aim is to be pain free so as soon as I feel any, I up my dose - only needed to do that twice just for one day each time so far. I get tired more easily so as soon as I feel any strain I stop and rest for a while. I already had quite a healthy diet but am now super strict - minimal carbs, no sugar, low fat, no alcohol and maximum recommended doses of Ca, D3, K2, Omega 3. I take the Omega 3 in oil form just before taking the pred and this seems to protect my stomach from any discomfort. I was getting bloating after eating but a strong probiotic seems to be sorting that out
I’m supposed to drop from 12.5mg to 10mg tomorrow. That huge drop makes no sense to me and it’s New Year - we’re out tonight and I’m going to allow myself a glass of bubbly at midnight - so I’ll try 12mg for the next couple of days, then 11mg and finally 10mg when I feel I’m ready.
Hi and welcome. Both you and Cocoachanel have mentioned that you are supposed to taper your pred dose from 12.5 to 10mg and I just wanted to say that PMR has no respect for the schedule you have been set by your doctor and the guidelines. You have learned this early lesson about managing your energy demands and you will quickly learn how to taper your dose of prednisolone to your body’s individual needs and timetable.
Things are going to be a bit different for you as you come to terms with your condition but you will soon be back to your old self, just probably not the SUPERWOMAN you have become. Sadly that role may well have brought on the PMR ;it seems to be the most highly motivated types that succumb to it. You are in good company here.
For someone who has just joined the forum - you have managed to learn a LOT in a very short time! As Snazzy says - some people take years to work out where it went wrong. I often say pred gives you wings - but it is a very treacherous feeling and you think you can do everything you did before, you race around to catch up what you missed and then - CRASH!
In some ways I was ready for it - I'd had PMR for 5 years without pred and had had to slow down a lot with the pain and disability so was used to that when I was finally offered pred and the pain went, a lot quickly and the rest over a period of about 3 or 4 months. And whether you have been less active for 5 years as I was or just a few months like most, when it comes to activity you must build up slowly over at least weeks and sometimes months and it is unlikely you will get back to the level you were pre-PMR as long as it is still there. The pred CURES nothing and the underlying autoimmune disorder is still there is the background, attacking your muscles and other soft tissues, and making you feel a bit as if you have flu. I carried on skiing - but I live in a ski resort so can ski every day if I wanted to. But I had to start each season with a few very short runs for a few weeks and even by the end of the season, skiing 2 or 3 times a week, always with rest days, I hadn't got back to the level I could ski pre-PMR and pred. It didn't really matter, I was out there in the sun, but had to enjoy it in a different way.
I have had PMR for 1 year now and it has probably taken that long for me to accept that I have it. I am 62 and had a very busy life juggling helping with grandchildren, inviting adult children for Sunday lunch and helping my elderly father. We think we can do it all until our bodies say stop and take care of yourself. You will learn to be patient and that it is okay to rest without feeling guilty. I wish you well on this crazy journey that none of us expected or in most cases, even heard of. Good luck xx
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