I have just been diagnosed with PMR after suffering now for about 3 weeks in so much pain,I was on blood pressure tablets so first of all is thought it was a side effect from them,but after loads of blood tests it's been confirmed PMR. The doctors have started me on 15mg steroids but I've been on them a week now and I can only say today is the first morning I haven't woken up in horrendous pain. It's hard to explain to anyone who hasn't got it how very painful the mornings are, I dread going to bed to wake up, firstly it was waking me up early hours of the morning and no amount of ibrufen would ease it. The most simplest tasks of even combing your hair, getting dressed,going to the toilet I have been crying in pain.i have to get up an hour earlier just to get ready for work. I would like to know if anyone out there can tell me if it does get easier after being on steroids for longer than a week? And if 15mg is high enough dose? I feel like I have aged to 90 these last could of weeks...it's awful ..many thanks ..
Help!: I have just been diagnosed with PMR after... - PMRGCAuk
Help!
Debs I really sympathise. I try and forget how I felt before steroids. I was heading for a wheelchair and a care home. PMR really is excruciatingly painful. I started at 20mg and within a few hours the pain disappeared like magic. Ibruprofen has no effect.
Thanks piglet. ..it's an awful thing feel like I'm an old woman at 52..I have got up this.morning though not much pain still there but not like first before diagnosed. .urghh
I am 55 and was chair shaped getting out the car, couldn't lift my arms and walked verrry slowly everything hurt so much..it was a struggle every morning and I work full time - it was so hard..
strange thing is id never heard of it before! obviously heard of arthritis etc but this, and then found out in work there were three of us with PMR, just not happy about being on steroids long term , but if it helps with the pain then i got no choice. as cant go through this every morning crying in agony...
Good morning
I really do sympathise with you,I was climbing the walls with the awful pain,but after diagnose and put onto 15m steroids the pain was almost gone. It will get easier,but not an overnight thing. I wish you better.
Many thanks for that. .it is getting slowly easier just want it to happen quicker. .can't bear it much longer
I'm afraid nothing is fast with PMR, but you will get there.chin up.
I really do sympathise. I as in exactly the same state a year ago! The pain did ease as soon as I went onto steroids, but it took about 2 weeks to get under control. As you are new to this condition I strongly recommend that you get a copy of Kate Gilbert's book - "Polymyalgia Rheumatica and Giant Cell Arteritis: survival guide". On Amazon and very helpful.
Hope you start to feel better soon. Good luck.
thank you Charlie, its nice to speak to people who understand what its like, i think my husband thinks im putting it on !!! like asking him to undress me etc, i just got to give it time to start working with the steroids, typical woman want it to go away straight away, the mornings are a nightmare, will look out for that book, many thanks for your help ..
Hi. My heart goes out to you. Try taking the dose at night as late as you can with a small snack (yoghurt). I found taking it in mornings didn't help enough. Then took them at 2am which did the trick but wasn't that convenient. Tried 11pm and voilà no pain next morning at all. I am now down to 8.5mg but reduce very slowly. I too felt I'd aged 30 years when I started. Went from being a sporty, active person to a crippled wreck. BUT if it is PMR then the steroids will help for which I am eternally thankful. Gentle hugs. Mary xx
ahh thank you poppet, feel such a baby , ive never been ill and now this, crying just to comb my hair in the morning let alone try and straighten it ha ha, was even thinking of going bald, !!! i think i just got to give it time for the steroids to kick in , typical woman want the pain to go away over night, but i will try taking 5mg at night and the 10mg in the morning see if that helps.. many thanks again .. xx
Debswales, all of us will both empathise and sympathise with what you have been going through. Whilst some people find they have a miraculous response to their 15-20mg starting dose of steroids - sometimes within hours - for others it isn't unusual to find that it can take a week or two to notice a difference. Occasionally, the slightly higher dose is needed, especially for those who are overweight. Plus you are working, and many of us with PMR and/or GCA remain in awe of those who manage to work, especially in the early days following diagnosis. Importantly, after a week on steroids, it sounds as though you are feeling much better. However, don't be tempted to think that this improvement means that you can now go straight back to doing all the things you did before - the steroids aren't curing anything, they are just damping down the inflammation that causes the symptoms until PMR goes into remission, and that can take anything from 2 years upwards. If you overdo things, PMR can come back to bite. So we do have to learn to help ourselves and manage this condition or it will come back to manage us. So do give yourself plenty of TLC, read the book that Charlie1boy has recommended and, hopefully, you will find yourself continuing smoothly, albeit slowly, towards recovery.
thank you Celtic, its just so depressing that this will be with me now for god knows how long when ive always been a fit and healthy person, like you said ive just got to give it time for the steroids to kick in , this morning was better, as the last couple of weeks ive been dreading waking up, even to pull the duvet up is a mammoth task, and i do have to work, but i find using my hands (as im a typist) is actually better for me , than them seizing up by not using them, many thanks for your reply.
Debswales, yes, it is depressing to be diagnosed with such a long-term condition and accepting this is probably the most difficult part of the illness. But you will gradually get your head around it all and find that you are in control of 'it' rather than 'it' being in control of you. It took a year for me to get a diagnosis during which time I spent 4 months in bed and travelled to hospital rheumy appointments by ambulance and wheelchair. So eventual diagnosis and treatment was a miracle in itself for me. My first thought in an endeavour to get back some control over my life was to research pro-inflammatory and anti-inflammatory foods, and stick to an appropriate diet - by no means a cure but definitely an aid alongside the steroids, and it kept me busy and out of mischief! No doubt, you are kept busy with your work, but if at any time you feel any return of symptoms or increasing fatigue, don't hesitate to take some time off rather than battling through. In other words, listen to your body! Meanwhile, we're all here for you.
Is it impossible for you to take a couple of weeks sick leave until you are sorted. And stabilised?
Also your company / work place needs to make adjustments for you. ( unless you are self employed in which case it may be more tricky).
Hope you feel better soon.
It's an unpleasant condition.
to be fare they been really supportive and in the first week o being diagnosed i was off for a week, ive just told them if im late in its because of trying to get sorted in the mornings, but each day seems to be getting slightly easier, its just such a shock as ive never been ill in my life and now this, .... many thanks
That's good they are being supportive. You will feel a bit better but it is a bumpy ride this disease. I've had it since Nov 2013. Or I should say that's when I was diagnosed. I think in fact I'd had it before that. Have a good day.
youve had it as long as that?!!! OMG ,, something to look forward to now for me !!! good luck, and thanks again
If your husband thinks you are 'putting it on', this isn't an uncommon reaction because most of us don't actually look ill. What you could do is get a copy of Kate Gilbert's very informative book: Polymyalgia Rheumatica and Giant Cell Arteritis, a survival guide, and suggest that he reads it. I've had PMR since 2011. I think it's on the wane and am now almost down to 4.5mg of pred, taking the reduction very slowly. Don't be afraid of pred - there are worse things!
Good luck.
I am going to get that book! x
thank you , trouble is you dont look ill eh? but suffering inside, i must get this book as a few people now have suggested it .. many thanks
Top tip from me when book arrives after you have read Mark up bits and make family read not you tell them . I found it works better i have GCA My hubby wanted me to tell him what I learned from Kate's book I made him read men take it in better that way I also left it by coffee machine/kettle marked up I force feed it all. If any complaint cotton wool was a bit tight at times take a bit of sick time if you can you are ill in fact very ill you need rest
hi Debs yes you will improve on the steroids - it takes about 3 weeks for the meds to kick in. Some people improve very quickly. For me, the first hours after taking the first dose was amazing! I could move! Bend, lift my arms! It was like a miracle! I am not taking prednisolone now as weaned myself off of it a year ago but my symptoms have returned and am seeing the doctor today. I totally understand that you feel like an old person - PMR has a huge effect on your mobility! Good luck - it will get better! By the way I can't remember what strength of pred i was on at the start, but it was 11 tablets for 4 weeks then 8 for another 4 weeks, gradually down to 1.
Hi Debs,
Think all the above have covered most things. However I am a bit concerned about your head pains, they sound more like GCA than PMR, so IF they continue please go back to doctor as the level of Pred you are on won't be enough!
I was diagnosed in Aoril 2012, eventually, with GCA, but now am convinced I started with PMR in Sept 2010! So it's not a quick process, even once you are diagnosed. Of course as I started at a much higher level it's taking me longer to get off Pred.
Get as much help as you can from work - at all levels. You may have to explain your problem more than once, but you, and they have to realise you are ill, and you cannot perform as you used just because you have the pills! They bring their own problems as well!
Learn to pace yourself, and have the willpower to say no when you feel you can't do things. That's quite difficult to do, especially if you're used to being superwoman! Good luck.
ahh thank you Dorsetlady, i havent had headaches (yet!) as i have been making notice of that as like you say that can be GCA, the only think i have had is aching jaws !!! Yes i think i got to have a new look on life now and yes your right learn to say NO more, many thanks for your reply
Hi again Debs,
Yes, watch the aching jaws! Also when you said it was painful to comb hair - was that from shoulders being painful or tender scalp, cos that's another classic symptom.
Just keep an eye on things, or better still a diary, then you can easily explain to GP if things get worse. Take care.
Good Morning Debswales, once again the girls & lads have come good with sound advice. With sound advice from the 3 main forums after 18 months I was pmr& pred free, I class my self among one of the lucky ones. we are all affected different on this journey . for me taking pred early morning with a light snack worked for me then back to bed for a hour.if you need any advice or just a chat dont be afraid to post. just to add if you follow info from the forums + slowly reduce your pred you should come through it. Best Wishes & do not be tempted to over do things. take care. Dave.
It might help if you can have a week or two off - because it isn't just 15mg of pred you need to manage PMR. You have to adjust your activities to avoid the things that make it worse. Your muscles remain intolerant of exercise and that won't change much for some considerable time.
And as DL says - watch that jaw ache. Is it aching that starts after chewing and fades when you stop? If it is then it could be sign of GCA, and your severe PMR and slow response to 15mg pred might also fit in. Any eye symptoms then off to the doc - and if it is overnight or weekends then go to A&E.
If things improve steadily over the next week or so don't allow your GP to persuade you to reduce too quickly - you need at least 6 weeks at 15mg if not more and then reduce in tiny steps - not more than 1mg at a time and preferably spread over a couple of weeks at least.
Three of you at work - you can have your own support group. Whereabouts do you live? Perhaps there is a support group in reach. Or are you Debs in Wales? In which case there won't be.
Thank you for your reply been most helpful, yes I live in Wales South Wales , I'm due to go back to doctor in 2 weeks , I must admit each day getting a bit easier ,but like the girls in work say like you have said it can flare up again so I'm being careful,thank you again
Where in S Wales? Just how far from Cardiff/nearest big town would do.
Hi
I was diagnosed in Aug 16 on 15 preds
I was working full time but had 4 months of sick as was unable to think straight and had such fatigue no pain once on preds .
I am back at work down to 11 preds but unable to do as much as I was doing .
Please be careful its hard trying to lead a normal life with this illness
I am still learning that although I think I can do things, but know that if I push myself I could end up back where I started .
Prime example took my Mum out in wheelchair Friday, fine whilst doing it. Sat and Sun so fatigued and stiff thought I may have to increase Preds but luckily fine today.
You will learn but just be aware trying to overdo it is asking for trouble.
Best Wishes
Rose
Ahh thanks rose,it's hard getting used to it and working full time, feel a lot better today been on the press now a week so I think or hope they kicking in,as you know it's the mornings that are a nightmare ,I've cried like a baby so much pain just minor things are a dread..thank you for yr reply appreciate it
15mg is not enough, you should have had relief in at least 3 days, you should go up to 20 mg, and if that does not relieve symptoms you may need to go on a highter dose. I have had pmr since spring of 2012. I go up and down on the steroids, like a viral infection will put me in flair and I will have to start back up to 20 mg all over again, then try to titrate down. The lowest I have ever gotten in all these years is 7 mg a day. I am a 70 yr. old female. I fight it, I do exercises such as walking, when I can, and tennis when I can, an yoga when I can, mornings are the worst, I never feel good until about 3 pm every day. Good luck! get pain relief, if you have to up on the steroids do it, and have some quality of life.
"you should have had relief in at least 3 days" - not necessarily. There should have been a noticeable improvement in 3 days but it is not uncommon for people to need up to a couple of weeks for good pain relief. Although I had a dramatic improvement in 6 hours, it was actually months before some of the pain faded. Starting with a higher dose makes the cumulative dose higher - and doesn't always achieve any more. I agree that Debs might benefit from 20mg for a short time but then she has to reduce from there too. She would have less pain if she were able to take a few weeks of sick until the inflammation has been cleared out and then she needs to modify her activities - working with PMR is not easy but it isn't always served with a higher dose. The muscles remain intolerant of acute exercise as long as the autoimmune disorder is active - you can't stick at a high dose without risking more side effects, one of which is muscle problems as they weaken due to high pred doses.
It's all swings and roundabouts and you can't simply take more pred, you have to do your part in managing it all.
Hi there, this web site has been very helpful to me, i have rung the doctors today as i did cheat at the weekend and took another 5mg making 20mg preds and i felt like a new woman for two days, went back down to 15mg after as i thought i better check with my doc and felt terrible this morning back to pain, so i have been in touch with the doc (who is very good i might say ) she says stay on the 20mg if its working till i next see her next week, cant believe in one day i can feel like s....t again !!!
I just want to say my heart goes out to you Debswales. Hang on in there...and hang on with us here! This forum has been a huge help to me, as it will be to you over the coming months. We are so lucky to have each other. My husband was diagnosed with myasthenia gravis 20 years ago when there was nothing like this to help.
Hi Zhenya,, yes this web site has been very helpful to me, i have rung the doctors today as i did cheat at the weekend and took another 5mg making 20mg preds and i felt like a new woman for two days, went back down to 15mg after as i thought i better check with my doc and felt terrible this morning back to pain, so i have been in touch with the doc (who is very good i might say ) she says stay on the 20mg if its working till i next see her in 2 weeks and then perhaps reduce slightly again after more blood tests. good luck with your husband., and thanks for your reply
I know just how u feel waking up no knowing how much u will be able to do with the amount of pain.i was put on 10 then 20 mg of pred now iam reducing 7.50:5.00 for 1 month then 5mg for 1 month. I am feeling a lot better than when this pmg started in August. Some mornings good some hands are stiff and achy?. Hopefully things will get better for all of us.i was also diagnosed with Lymes disease, symptoms are very similar,put on antibiotics. Not easy battling 2 things
Life can be so cruel eh? I suppose we must be grateful there is pain relief out there cos I think I would be suicidal by now. .just hope things improve I'm sure they will ..good luck with everything
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