I m 84.After months of increasing pain starting in earlySept or before, I was diagnosed with PMR. Today. Stared on a prednisilone 15mg per day.
The pain had become so bad that I could not get out of bed....sometimes trying for
an hour befor calling for help. Have most nights sleep disurbed by pain in shoulders, neck hands waking me ..
Pain killers of no help. Lost appetite months ago.
Hands could not hold stick needed for walking. Hands were swollen and could not grip or make a fist.
Daughter in law said it was PMR which i had never heard
Finallysaw G.p and had blood tests
Today visited Gp today and had to be almost lifted in to car. He confirmed PRM.
Had to be lifted into car and helped all the way. Could not sit down as knew could not get up.
Truthfully felt suicidal.
Magic or a miracle. ?
3 doses of PRednisolone.
CAN IT WORK THIS QUICKLY?
By tea time I could make a cup of tea,
And even attempted to trim a bit off finger nails that were 6 weeks growth....with just a bit of tingling and pain and got in and out of bed for practice several times. And it worked.
Can feel the nightly shoulders, neck and hip pain coming but less than usual.
Maybe I shall sleep to night.
Question ...did anyone have severe, unusual, left breat pain before main sites of pain stared or very severe earache and pain down side oneck into shoulder , arm and hand ?
Thanyou for reading
Freya33
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Freya32
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How awful for you. Yes prednisolone worked quickly for me too and i am sure you will feel much better very soon. I had been staggering around with a stick at 70 when previously fit then after a short time on pred I was walking the dog and feeling like a gazelle! It was an incredible relief. Steroids have been a miracle and a curse for me as side effects and getting off them is very hard. My advice is remember you must take it easy as the Steroids are suppressing your pain not really curing the PMG and i am sure you will continue to improve. Please let us know how things go.
Hello Freya & so glad you’ve found us at the beginning of your journey.
Oh, the relief of Pred (we tend to shorten Prednisolone to ‘Pred’ things will improve over the next few days & yes it’s like a miracle.
A Word of Warning - Do Not Start Rushing Back to Catch Up on things you have been unable to do in recent weeks, rest is important & let the Pred work it’s Magic.
DorsetLady will send you some information later this morning. We also have an FAQ Section which l’ll send you a link for which may help answer some of your questions.
Many of us had/have other odd pains which maybe due to the PMR so give that a week or so & if they persist see your GP
l had Shoulder, Neck, Face Pain, l could never get warm…….
I think i have been a member here for 9yrs...but dont know why I joined; probably for lyme disease.
No i won,t rush to do things. ...
Cannot as have been housebounf for years.
In a wheelchair for awhile till got new L shoulder from a wonderful Surgeon. No pain after... til now....and lesser pain than repaired shoulder
And a new R hip the same year.Now just waiting for new rest of joints....well that won,t happen in my life time .
Yes ,just need a few more years to sort papers.
Raining too wet for the garden, too steep ,too slippery...cant risk broken bones. Even with walker.
Yes, cold all over apart from tummy, Wrists and hands hot but cooled down withthe pred. Always cold but especially cold with my" imaginery" Lyme, and now " trappped nerve in the neck".
I put heater on, daughter comes in"" hot in here" she says and turns it off..."Old folk need exra warmth." I say.
I dont say "you will be old yourself one day "because i know now what goes around comes around .
And I can just turn it on again... now my hands work .
I have just paid another £520 for 500 ltres oil and they wont put the C H on.!!!
This site is a lfe saver.
Lovely, kind folk.
Sad they have to go through all this pain and discomfort.
Good to hear such a quick response to Pred, hopefully your shoulders etc will follow suit (but don’t get too carried away and think it’s completely disappeared) and as mentioned by MrsNails please find information post linked -
I will pred till i die if it stops that awful pain that has crippled me so sneakily over these months,
son says years.
It was not my daughter ( who says its just a trapped nerve,)but my son,s lovely wife who told me it was pmr. (We have never had a cross word in 28years . )
She saved her husbands life by driving him straight to the hospital
when his G P practice said they only could see him over video call in two weeks time.
She drove to local hosp, waited 45 mins till test results came through which were all sky high crrp over 200, liver dreadful etc they told her drive as fast as she could to the MAIN hospital as ambulance was unavailable and road ambulaces would be too late
Main hosp said an hour later and he would have died.
They gave intravenous antibiotics and his wife told them to give him steroids. They did. The steroids saved him. He was improving that same day and .
Was six months recovering..at home
So i knew she was right with my pmr....
even though the recep had told me on phone thatmy tests were normal and no further action needed, i assumed that was it and and was going to accept that but son said "go back as otherwise you go under the radar and forgotten, . Go and see.....Mr....?i have met him.
I thought it courteous to ask for a gp referral
So i waited another couple of weeks, rang surgery and left Dr a mesage about this and he saw methe next day.
By then i could not walk unsupported , hands were swollen, very, very painful, useless, and i could not lift myself even with aid.
I thought then if its not pmr then I can.t stand any more and time to go.
And i had everything ready.
I was taken to the surgeryand said to Dr.even if the tests are normal please give me steroids and if they work in 72 hrs then i must have pmr and at the same time as i spoke he said, thetests werent normal thecrp was 60
And the bood was ?
and it is pmr and he gave a prescription and will phone in three days to see how it is doing.
And i am telling you all this stuff because i want others in a similar situation to persevere, press on, badger their G p. Do not give up
Go and see a consultant privately.
Trust to your gut.
Don't put up with pain that becaomes unbearable.
You know your own body best and the gut and brain are in constant communication
It does not matter if the symptoms seem bizarre...they are real.
Persevere. Someone out there will have the missing pieces and give you the answers.
Yes that's prednisolone it works so quickly if you have PMR ...I was the same 10 years ago the next step was a wheelchair..and here I am 10 years later on a maintenance dose walking miles daily ..The only thing I can't really do is driving distance or sitting in the same position for long as I suffer for days after..Not bad for a 68 year old ..
yes pred does work that quickly. i know exactly how you feel. but good news i am now off pred, and have been for 3 years, just keep on this forum its a big help. and when the time comes to start tapering do the dsnls but the gilrs on the forum will tell you how it works good luck girl ps i am now 80 years old and fighting fit thanks to all there help
I stood outside the pharmacy and took my first 15mg of pred at just after 10am. At 4pm I stood up from the computer, walked downstairs and carried the cup of tea I had made back upstairs. And then realised what I had done: no unfolding myself out of the chair, walked not stomped downstairs like a toddler and walked back upstairs instead of putting the mug on the top step I could reach, crawling up on hands and knees and repeating that. Yes - sometimes it can be that fast.
It sounds as if your sternocleidomastoid muscle may be tight and spasming. That can happen in PMR, and could cause the referred pain into the arm. Earache CAN be part of GCA - if it doesn't improve with the pred do watch out for other signs of GCA. If the breast pain is on the same side as the other pain it could be nerves being pinched by tight muscles and causing referred pain.
What an enormous sigh of relief you must have given att 4 pm realizingthe pain had eased and you could move more easily
Your reply very helpful. I think you are totally right about that sterno ......etc muscle. ( shall read up more about that It would account fo r pain from left side ofbreast which spread upwards right into armpit along breast bone and int front and back backof shoulder.it all makes sense
And the spasoming is why it gets so intense and then eases. Sudden agony twinges.
Thought it was new shoulder slipping out
Covers lots of things and i can see the connections.
Thank you
Keep getting well
Like PMRpro, within an hour of being home from hospital with box of Prednisone in hand, I took my first 15mg. Honestly, I couldn't believe it, within an hour the pain had vanished. Wish I could say the say today. Three years on and still taking them. Be so careful not to reduce too quickly, big mistake ! If like myself, I was told to taper far too quickly, three months later Giant Cell Arteritis set in.....then had to take 40mg. A friend of mine was diagnosed with PMR many, many years ago, no GCA. Her doc may have been more clued up in PMR/GCA as he started her on 60mg and told her to taper very slowly. PMR went into remission and never shown it's head again and never got GCA. Might be prudent for doctors to do this, then there would be a lot less chance of GCA developing.
I do hope you're successful in your tapering. Bear in mind many aches and pains isn't always due to PMR but Osteoarthritis.
They don’t usually take biopsies when we’ve been in Pred a while like I was. Would have come back negative. We seem to know when it’s GCA though. It is a different sort of headache, plus tender head, tender temples, jaw claudication, pain in jaw when eating or when opening mouth wide and I even got top teeth ache. Also sometimes blurry vision. Just be aware of some of the symptoms, we don’t always get them all. I’ve been tapering by 0.5mg Pred every month, but still had flare. Went up to 10mg last Sunday, dropped 1mg Mon and today taking 7mg. I think I’m going to remain on 7 for the foreseeable. Symptoms all gone. I increased from 5mg to 10. Can’t seem to be able to get lower than 5mg. Still don’t really want to take the sparing drug Methortreaxte. Try one more time to taper myself !!
Very glad you've found this forum, Freya, it's a lifeline in the bewilderment of PMR and full of knowledgeable people who have lived/are living through the many twists and turns. There's no question that pred is the answer but it sure needs adjusting to, for instance there are coated and uncoated versions of pred, you can split the dose a.m./p.m - loads of info in FAQs section thanks to the dedication of Mrs. Nails and Dorset Lady and other generous contributors with their time and effort. Everyone is different so just enjoy the relief of your present regime whilst slowly gathering information, it's a powerful way of exerting some measure of control over what has happened to you out of the blue... well done to your daughter for spotting it. Good luck 🌺
I've been on enteric coated pred for several years now, at present I take 7 mg (5+2mgs) with a couple of spoons of Greek yogurt when I wake up around 7a.m. followed by breakfast at 8a.m., and 3x1mgs at 9p.m. with yog. Coated pred dissolves in the gut rather than the stomach and takes around 4-5 hours to release. Stomach protection is recommended with plain pred so the cost works out about the same to the NHS. I much prefer coated, the PPI protection with plain pred messed up my digestive system last time I was in hospital and it's taking a while to set it to rights...
This is my personal experience after some experimentation, hope you arrive at a good solution for you - patience, persistence and acceptance are also rather necessary! Plus rest,rest,rest.
I dont think I replied to your veryhelpful message. Thank you.I did take them with yoghurtwhen i woke but now I take 3 at ten with my porridge and blueberries. I have the yoghurt after my dinner.
No tummy trouble.....though i had lots of stomach problems before starting pred.
I might ask for the coated ones next time i see the Doctor.
Thanks for your reply, Freya. I've been down to 7mgs but family stress (which seems to be resolved now) has been a factor in causing flares - I taper very slowly with the DSNS method which I'll be doing after all the festivities. There are long-termers on the forum, PMR takes its own time and is a very individual condition, although on diagnosis I was told it would be all over after 2 years - if only! I'll get there, as will you - and good luck as you progress 💐
Just to clarify - are you taking 5mg three times a day rather than one dose of 15mg? That's not usually the recommended way for PMR...one dose, preferably first thing in the morning with/after first meal. Any reason why you are taking them as you are?
Well you need more tablets for a start….can you contact GP surgery and get a prescription. If you are on 15mg a day (3x5mg) 28 tablets are only going to last 9 days. So what are you supposed to do for the rest of the time until you see him?
Unfortunately Pred does affect BP…
…and you do need to take full 15mg in one dose certainly at the beginning, and as early in the morning as possible.
Think you need better guidance from your GP….please contact surgery.
Higher doses of Pre will mask OA pain... but the pains may be due to PMR.. not sure about the back pains though. You can take paracetamol with Pred, but not ibruprofen tablets... although you can use the cream sparingly.
Just wanted you to know that I am doing very well.
I can walk, and the body is very good.
All pains mostly gone even arthritis pain, all except hands.
What magic pred works.
All those months gradually going downhill and thought it was just old age and to be expected.
I saw the GP on Friday and he saw how well I was doing. He has been very kind.
BP gone up high . It happens to some on pred. I shall drink more water .
Appetite is amazing after months of not really wantingfood.
Slept last night all through....first time for months.
Only thing is the hands and I wondered if anyone else is having same problem?
Hands were very swollen and painful.
The swelling went almost immediately once I was on the pred.
I can use the right one fairly well now though the L one not so much.
The pain has been constant preventing sleep.
They not feel like my and hands anymore. They hurt and its like electric shocks pins and needles and corrugated cardboard.
The right one is improving but still feels strange.
Will they ever be right again?
Thank you to everyone on here who has replied.
Your info has been invaluable.
I thought the breast pain must be cancer as had a little hard lump as well....but then i now understand it is all part of of the inflammation that pmr causes...so that was good to know.
Also to take the preds all together and to ask for them in a bottle.
So helpful when you are new to this.
Strangely all the digestive and bladder issues have all resolved themselves to. It must have all been part of the same thing.
I hope everyone on here is getting well.
You just have not to lose hope and pred does the rest.
Have a Happy Christmas to all oof you.
I have been given that bit more time and ability to sort my years of treasures ( rubbish to others) so feel very grateful.
Good news and hopefully as you reduce the Pred, the BP readings will reduce as well.
Hands-lots of people do suffer from carpel tunnel syndrome alongside PMR-so do monitor that and maybe suggest to GP if it does not improve.
This is a fairly recent post on that.. and from that you will also see related posts -might be worth reading though and see if anything resonates with you.
Thank you,I will look.I have had osteoarthritis for some 14 yrs.
Left shoulder new ... (every day i bless my surgeon for it) and new r hip. Both done in same year. The R hip has started to hurt again.
, Was on waitinglist for left hip. Both knees bad but pain much eased while on pred....no need of pain pills now( taken every day for years).nothing really worked.
R shoulder gone was supposed to be on waiting list....?
Too late now .
So i was in a right mess and am now practically free from pain.
Had to take only 2 pred today as didnt have enough to last.
You new left knee, Dorset Lady,Me not yet and never likely now under NHS...
Tis the shoulder that worries me as i was in wheelchair before new shoulder.
We have just nursed my husband through 7 years dementia . It was very hard and without anyhelp at all until last few months . He died nearly a year ago.
So i will not burden her with me.
I need to be able to do for myself and is why it was so awful not being able to move,to wash yourself etc.
But i can walk again now hand can hold stick feel very blessed..
Yes pred at chemist. Daughter could not collect as snow an d ice and we live at top of hill. Could not ask her...only get 28 at a time.,
You MUST have the pred and your GP needs to make sure you have reserves - 28 days at a time is NOT enough, especially if you have problems collecting them.
Can you not get them delivered from pharmacy? Then it’s their responsibility to get them to you…I know you may want to be independent-but it’s not always possible -and better than running short.
Forgot to add this in previous reply re carpel tunnel -
Oh dear, sorry.No Dorset Lady , no home delivery. Probably now onlyfor those who live alone.
I have been down for Home Delivery for years .
Now they dont do it yet on the wrapper it says Home Delivery.
I think they dont have the staff now.
Daughter goes regularly for her husbands diabetes stuff so she does not mind but yesterday she took me to the Dr.
We had to walk down as car was frosted.
First time I have walked down the hill, or up, in five years.
3 weeks + ago she had to heave me into the car and support ne into GP and someone had to help me across the room.....so you see the huge improveement that has been made....
To continue ..
Then she had to come back and defrost thecar and drive down for me.
So i did not like to ask her to go on to the chemist in addition.
And i wasnt sure it would be in.
She will go on Monday. She says,
I dont know why they o nly give ne 28...they are so very cheap.
And i dropped several trying to get them out of foil packets.
Daughter gets them out now and puts them in the bottle.
Can understand the issue (we have similar in the next village to ours) but if it’s part of Boots would have thought they should be able to get help from larger shops/pharmacies -but maybe not.
Taking less than you need is going to allow the inflammation build up again and inevitably cause pain -and dropping 5mg is a lot when you should be taking 15mg.
Hopefully if it’s only a couple of days it won’t impact too much.
Of course it can if that means the dose is too low to manage the inflammation. If dose didn't matter they would give you less. And running out altogether can lead to real problems with adrenal function. You must get through to the doctor that they need to make sure you have adequate pred to cover such hiccups in supply - if you have PMR you will be on pred long term - they shouldn't be restricting your supply like this.
Not just that - every time a script is filled the NHS has to pay a prescription charge to the pharmacist which is the same whether the script is for 28 x 5mg tablets or 128 x 5mg tablets. The charge is paid for every different dose though. By issuing such small amounts for a patients with a chronic disorder they are costing the NHS quite a lot of money. Someone doesn't understand the needs of a chronic patient.
Your pharmacist can provide alternatives if you can't operate the blister packs - they dispense the tablets into a more easily opened container. You sound as if your pain is relatively early in the night? That may indicate it is something else rather than PMR.
Which of enteric coated or plain pred is better depends on the person to some extent.
However - you should be taking your entire dose all at once in the morning and that isn't what I understand from what you say? Sometimes you need to peak dose in the morning to have the greatest effect on the inflammation which is only created once a day in the early morning. Occasionally some people find splitting it to about 2/3 in the morning and the rest a bit later to be able to extend the effect to a full 24 hours but you should always try 1x daily at th start to get to know your PMR and your response to pred.
I am 73 and had a relapse after 8 years. Like you my symptoms were extreme. I am taking 15mg of prednisone for last 5 days. I can feel an improvement every day but not as miraculous a recovery as I had the first time. Each day the pain and stiffness is receeding. I am grateful that I can do some basic self care and home care. It took three months to get a diagnosis because I was on alendronate for osteoporosis and my NP thought I was having a reaction to that so I stopped taking it and waited to see if pain subsided. Now I am on the right track ...
I was so glad to have your info on the hands as swollen and useless hands don't seem to affect everyone with pmr.
I felt my hands were doomed to remain useless but you said they would take some while to get better...and so gave me hope.
Hope is all we need....everything else follows.
They are getting better albeit slowly. The Right one now feels almost mine and apart from doing small things like buttons or peeling fruit it works well.
Left one not there yet but some improvent in pain level etc.
Happy New Year Freya32!So good to hear from you. I am glad my post was encouraging. After 2 months on 15mg Pred I am feeling almost normal. I do get tremors and fuzzy head for about 2 hours subsequent to taking the Pred. But my doctor said this is not uncommon. I have tapered to 12.5 this week so we shall see how it goes.
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New member just diagnosed with PMR
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