I have diagnosed with PMR last week and put on 15mg of steroids. In six hours I feel better but then the following days I feel even more pain. So in the five days taking the steroids I seem to be getting worse. Is it normal to take the tablets have relief for six hours then get worse again? I can nearly move in the mornings now. If others experienced this how long before they started to feel relatively normal again? Thanks
Have you overdone it because you felt better? This is a mistake I made in the beginning as did others but we learn to pace ourselves because the PMR is still there with all the inflammation . The pain is only being managed with the steroids. The other possibility is it may not be PMR. Others who are more knowledgeable than me will be along to advise.
Hello Julia
Sometimes a split dose can help, taking 10mg in the morning and 5mg about 3-4pm, or sometimes 20mg may be needed.
Everyone finds their own happy medium.
I had 6 hours relief like you and split my dose as above, I started on 30mg in July last year and am now on 10.5 mg a couple of hiccups along the way but caused mainly by reducing my doses as the doctors wanted, but my body couldn't cope with it so my advice is, later down the line on your reductions, take it steady and listen to your body and not the doctors if you have problems on reducing your steroids.
Take care and good luck on this PMR journey.
You will find so much help and support on this site, people are amazing!!!
You have to do your bit - you can't rush around doing all the things you didn't do for the last how ever many weeks! The pred only MANAGES the symptoms, it hasn't cured anything and if you overdo it your muscles will develop what is called delayed onset muscle soreness as if you had run a marathon without training and take a long time to recover. The actual cause of the symptoms is an underlying autoimmune disorder that causes your immune system to attack body tissues by mistake because it can no long recognise "self" - and your muscles become intolerant of acute exercise/use. You have to "train" then - but starting with very small amounts of activity and building up VERY slowly.
In some people the antiinflammatory effect of pred only lasts 12 hours - they find the pain and stiffness returns in the evening. They may find that splitting the dose helps them better. And it also depends what time you take it. The inflammatory substances are shed in the body about 4.30am. The sooner you take the pred the less inflammation has been caused, the less the pred has to do. The optimum time to take ordinary pred is 2am - then it is there when the inflammation starts and it never gets a hold. Many people take it in the early morning and settle down for a couple of hours to let it start to take effect.
And perhaps you need to start with 20mg for a couple of weeks to clear out the existing inflammation and then work from there - like spring cleaning lets you do just a bit of a dust for the next while.
And do less!!!!
Thank you for your advice and everyone who has responded. I have been crawling into work and trying to do everything which clearly was a bad idea. I will speak to the doctor to see if I need to split or increase the dose and I will start taking it easy. I just thought I would take the pills and then start getting better. Naive. Thank you again
" I just thought I would take the pills and then start getting better"
There are a lot of doctors who think that too! But I'm afraid it is far from true! Most of us on the forums who are retired are amazed anyone manages to do more than a very lightweight job. I worked through 5 years of PMR without pred - but I was self-employed as a translator and all I had to do was stagger from my bed to the computer! I could no more have commuted than have flown - and it was a longish time before I was well enough to have even attempted it even when I was on pred.
It happens to most people - except the ones who found the forums BEFORE diagnosis and had been well warned what to expect!!! Even then - some think they will be the exception and manage to continue as normal. It often ends in tears!
You are spot on, as always, Eileen. I am retired and could never have managed to work at the beginning of PMR. I'm not sure I could now, even though I feel good. There are times when my body tells me I've done too much. It's mainly tiredness but some pain. We should listen to our bodies more!
I too thought that and apart from a 7 week phased return that ended up in tears I've not worked since August so Julia, they are so right in their advice to you. Listen to your body, I thought I could do it all but very quickly was informed by my body I couldn't.
I was already physically limited by chronic lower back pain when I was diagnosed with PMR so it wasn't like I was going to overdo it so to speak. But even with that I noticed a huge difference in my body. PMR really knocked me for a loop even after getting on the prednisone.
Hi Julia
I can't believe your working. I had to take early retirement. I tried to return against my wishes more my Dr and husband and only did 2 half days.
I find as i reduce I'm more exhausted and there is now way i could put in a whole day. I truly don't know how people do it but my advice if you can be off and get better.
Eileen as usual is spot on and listen to your nody in reducing I'm the turtle.
Mariane
I was only "officially" allowed a two week phased return, but my colleagues could see I was struggling, so I "unofficially" had longer. I eventually got back to full time, but like Eileen said, it felt like I'd run a marathon without the training...! I spent every evening and all through the weekends doing nothing and usually sleeping so that I had enough "get up and go" for the daily commute and work five days a week. So like you, after tears, I knew I had to slow down, so have taken time off sick, which could well need to be longer. It will evetually affect my salary, but for now I need to take time out.
Yes I'm on half pay now, not the situation I wanted for my last year of work, it doesn't help I've reduced my hours in the last 3. Years dramatically also.
My pension won't be worth what it should be and at 54 can't believe or come to terms with how bad I feel at times.
I sympathise... Just before I went off sick I went to four days a week as a trial to see if it would help, but it didn't really. Hence my salary is now based on only four days a week. It's really important to pace yourself though, which I'm learning, but I felt like I wasn't pulling my weight at work and my colleagues were taking on the lion's share of our workload. I'm 55, but still hope to work until the state give me my pension (67!!). Like many people I hadn't anticipated having anything that would strike me down earlier than that, so I haven't made full provision for early retirement yet.
It's crazy feeling so unwell when we are only 54/55. At least we've been sensible and have taken time off sick from our jobs, although financially it's not ideal. I hope things improve for you and you're able to get back to work for some of your final year. Hang on in there!
I'm also 53 which apparently is young for PMR. And like you my pension will be worth very little if I can't work until my 60's. It's funny when you are in your 20/30's you just don't see these things happening. I hope that the pain does ease for both of us as it is b awful.
Just to add something a bit more positive...I was diagnosed in December, and struggled to work, and took 2 and a half months off which did me the world of good. at first i was exhausted and slept a lot, but started to walk daily, could only manage 20 mins at first. Im lucky in that I've slowly got a lot of my fitness back, my legs cope with fast walking now and I've started a bit of running. My arms are much weaker and I'm careful not to overdo things. But I'm back at work after a month phased return. Just wanted to say it's not all doom and gloom! But everyone is different i realise. I'm the same age as you. Good luck
Thank you. I have a dog so I need to get back walking as soon as I am able.
Pfffttt! Most people with PMR who are in their late 40s/early 50s are told they have fibromyalgia or CFS or depression or "it's your age". And doctors are so terrified of pred they won't let us try it or stay on it even when they know it helps.
I was still 51 - and had 5 years of PMR, no pred. Which taught me a lot, believe me!
You are so right, in our 20's etc we don't think to the future, then I was invincible, could stay up after a night shift clean the house, oh how those days are long gone.
I knew if I stayed in the NHS I could retire at 55 but never thought like you I would have to reduce my hours significantly to get there, therefore reducing my pension dramatically, and not able to earn in my last year a full wage to start my retirement on an even keel.
i hope your pain settles, and that your Rheumatology doctor is sensitive and sensible to your needs.
Yes Eileen I spent years with undiagnosed sjogrens as you know and 2 years of PMR all put down to the menopause, so we all need your expertise in these matters to fight our corners at our appointments-thank you.
Hope you all have a comfortable night tonight, I'm trying 10mg for the second attempt tomorrow fingers x.
Julia my son bought a dog when I was in the second month of diagnosis and steroids, I was so breathless and couldn't walk far at all, I now manage a mile but that's from October until now, with a couple of set backs, I'm not sure if I'm just slow in recovering from things or it's the PMR/prednisolone.
But you will get there if you take it easy and steady away.
My occupational therapist gave me a leaflet on pacing, and how to work out what you can do, it's an average and a bit less so you don't boom and bust. I had been pacing totally wrong before this, I thought it was just try and do what you can but take it slower, or do a job less than you would usually do HOW WRONG WAS I !!!!
so when you look into pacing don't make my mistakes.
Take care!!!
There are two really good links in this post!