Polymyalgia hit me out of nowhere......

Bones, joints and muscles
1

[i :steam: ]

Hello everybody ! I have been reading with interest all comments. I find it very helpfull and conforting to know that I am not alone in suffering these horrible never experienced before pains...I am 87 years old, and this PMR hit me suddendly one morning, as I woke up. I could not get up,

and the pains were terrible. My arms, from the shoulders down to my finger tips. I never had to take pills or medicines before. So, I was quite active, even redocorate my bedroom, and cut the laurel edge araund the garden. I worked hard all my life. Now, this curse has got me !....I was taken to the hospital emergency, and there, they all were amazing. They plugged me on ECG,took temperature, blood pressure, blood samples...and told me I was going into the acute medical ward. They took me to have an x ray. Then to the bed. There, 3 doctors came around and asked lots of questions. I was then taken down to xrays where they took about 10 other xrays of my body, including one down my throat !....The next day I was put on 20gms Predisolone, and a Gastro bloker. and was given a LARGE....injection in my tummy...to prevent blood clotting.....I was allowed to come home because I have my husband and family taking care of me. I am now wanting to come off Predisolone, because I feel so unwell and unsteady. I walk with a stick, to prevent me falling. I was taken ill in July. From 20mgs of Pred. I have cut down to 6 this week. Am I cutting down too quiclky ? I am worryihg about cutting down, but want to get rid of Pred as soon as it is possible. Any suggestions please? I will be so very grateful. Thank you all and wish you to all get well.

2

Hi Mariarita,

Welcome to our very select group! We don't want new friends (because it means you have PMR, wouldn't wish that on anyone!) but you are always welcomed warmly!

The only way you can tell if you are cutting down too quickly is if the stiffness and pain you had originally come back. If they do, yes, too quick and go up a bit until you feel better. You have to find the balance between you feeling quite well and the dose you are taking. Some people find the steroids make them ill and want to take less - I don't mind taking them as I don't hurt and can do what I want to. Only you can decide. I was diagnosed a year last July and am on the equivalent of 8.5mg/day and have been trying to reduce for a few months without success. I just start to hurt too much and give in. Well done to get to 6mg/day. But the question is - do you feel OK?

It's difficult to tell if the unsteadiness is from the steroids or from the PMR because that, too, can make you very wobbly. One thing I would suggest - and I know MrsK will also suggest it - is that you ask if the doctors have looked at your vitamin D level in your blood. If that is low (below 25-30 whatever the units are in the UK) then you should ask if you can get either high dose tablets from the consultant or injections to improve the level because a low level has been shown to make older patients very wobbly on their feet and getting the levels higher improves your balance and helps avoid falls.

good luck,

EileenH

3

Hello Mariarita and so sorry to hear of your sudden suffering which must have come as quite a shock after what sounds like such a healthy and active lifestyle. However, you have come to the right place as there is always someone here who has experienced and knows exactly what you are going through and you will certainly not feel alone amongst us.

As to whether you are cutting down the Prednisolone dose too quickly, as Eileen has already said, only you can tell by your level of pain. You should not reduce until you have stabilised and are comfortable for a few weeks on each particular dose. Once below 5mgs it is generally recommended that we remain at each following reduced dose for about 3 months as it is generally more difficult to reduce at these lower doses without worsening pain and stiffness. It is also advisable to have blood tests (ESR and CRP) prior to each reduction to ensure that the inflammation is under control.

At 6mgs, you are now on a dose at which the side effects of Prednisolone are negligible - our bodies are used to the adrenal glands producing around 7.5mgs of cortisol (natural steroid) daily.

Reducing from 20mgs to 6mgs daily in 5 months is certainly a very fast reduction and maybe this is the reason that you feel \"so unwell and unsteady\". However, if you have felt unwell for the whole of the 5 months of treatment without improvement then perhaps it would be advisable to get checked out with your rheumatologist.

I wish you well and do come back and let us know how things go.

MrsO

4

Hallo Mariarita and welcome. You may wish you wre not here but, as you are,you are in good company.

As Eileen has said, only you can judge whether your reduction is right. Were you just left to get on with it or did you get any guidance? It sounds as though you had pretty good care when you first had the dreaded PMR pain. Some people have been ages before being diagnosed and treated. You don't say whether the Pred. alleviated the pain more or less staright away. I've had PMR twice. First time the pain went in 4 hours but that was eleven years ago. This time ( nearly three years ago ) the thinking had changed and I was started on 15 instead of 30 as before and this time the relief took a bit longer.

Have you had any follow up bloods? I am left to judge for myself now but, to begin with, my GP did blood test every month or so. The results are not definitive and some people don't have raised ESR or CRP levels which does make it all somewhat hit and miss. But YOU do know how you feel and if the pain is bad you have probably gone down faster than is ideal for you.

I doubt whether anyone is able to reduce in a straight line, so to speak. We all find that there are glitches along the way and the trick is not to let the pain get too much of a hold. Mostly if the Pred.is increased back to the level where you felt ok you can resume the reduction before too long. My GP said that he would give it a week or ten days to see whether the pain is due to the body having to adjust to a lower dose or whether it is a flare. I have had both experiences. I am a bit more achey today, having reduced from 7 to 6.5 last week. I shall give it another five or six days before going back to 7 or whatever is necessary for reasonable comfort.

Unfortunately, many of us ( and I am one such ) have unpleasant side effects from the steroids but I have found that these lessen as the dose is reduced. Weakness, shakiness, exhaustion, palpitatipons are not uncommon and, as I know, very upsetting especially for people who, until now, have been strong and active as you obviously have been. If you have a look at the thread \"Where is Everyone\" lots of us have posted little thumbnail sketches and almost all have lead active busy lives and resent them being curtailed

I think I would talk to your GP about how you dfeel but you may find it helpful, also, to talk to us on here. Our experiences will often be different in some cases but there is always someone wo will identify with how you are feeling and offer sympathy and encouragement at the very least and, often, very useful advice. e are none of us doctors as far as I know but we between us probanly have more first ahnd knowledge than many GPs who may only have met a few cases.

My mother had PMR diagnosed in her late eighties and, as far as I remember, was down to 5 after a couple of years and seemed to cope very well on that dose, still living in her own house and doing almost everything except change her duvet cover!

Keep coming back. They are an interesting lot on here and, as you say, a comfort.

Good night. Sleep well.

5

ave come back from shopping at \"S\" supermarket. My daughter took my husband and I, to see how the new extension looked...and do a little shopping. I hated the place, and will not go there again....I shop online, and it is so much easier. I am now, quite exhausted, but I wanted to see if anyone had read my notice. I am so moved by all the replies I got. I never realised how many fellow sufferers were in this new world of mine..I thought I was only one of fairly few sufferers !...I am so surprised at how cheerful you all seem to be, having all experienced such a traumatic change in the everyday life. I am not clever at all, expecially at knowing what ESR or CRP means. I do not think the doctors in the surgery were I am registered, are interested in what happens to me. I have to look after myself, and have to fight to get my prescriptions.....I have an appointment in July next, to see a Rheumatologist at my local hospital. I am taking your advice not to cut my doses down too drastically. I seem to be doing OK at 6mg. I will take this until the New Year, and then only cut down 1 mg to 5mgs a day. I will let you know how I am doing. Thank you all for your kindness and discussion. Love to you all. Granny Moss.....

6

Granny Moss - you should be being monitored by your GPs, blood pressure, blood sugar and a few other things every couple of months at the most. If there is no-one in your practice who will take their responsibilites seriously, look around for another GP. You are entitled to see anyone in the practice, not just the person whose name appears as \"your\" doctor - I never saw mine, he was hopeless!

If you have already seen a rheumatologist - you can also ring his secretary and ask for your review appointment to be brought forward. Explain that you have been left alone to work out what to do for yourself. If none of that works - you would have to pay, but you can also go to see a rheumatologist privately. A single consultation is not terribly expensive - I'm sure someone else on the forum will appear and give approx costs because I know some have done that.

It is not acceptable for GPs to behave like that and I would be jumping up and down - despite the PMR! Once you are on steroids longterm you should NEVER have to fight to get the prescription. Or proper care.

And number of sufferers - I saw a figure the other day that PMR affects about 1 in 1000 people over the age of 50. So there are quite a few of us about. It also seems that the age at which people develop it is falling. One day there will enough of the workforce affected for someone to take notice.

all the best,

EileenH

7

Hello EileenH, thankyou for your reply. I telephoned my surgery and asked for an appointment with my doctor. In a short time, my doctor was on the 'phone to ask me how I was getting on, and other information, and I asked for a blood test. She agree instantly and she is posting the form to me. I do not understand about ESR and CRP. What do they mean ? It is so lovely of you to take time to inform me about the way to get results from doctors etc. Fellow sufferers are so kind and it is so helpful not to feel alone and abandoned. When this hit me, and I was in such umbearable pain (childbirth was so easy....! )I must confess that I thought I could NEVER live with it ! Steroids have been a great help, but I am putting on weight...and I worry about it. So, I am trying to get off them. I am taking 6mg now and will try and decrease down to 5 after Christmas....I am taking a 15mg capsule of Lansoprazole, a gastro blocker. Also I am taking calcium 3-D3, and vitamins A and D. At the hospital they gave me a large injection in my tummy...to protect me from blood cloths. I feel I have been looked after OK ?. I feel a little more optimistic now that I have found this site. I feel I have lots and lots of friends that understand exactly all the problems that will arise from time to time. Everyone seems cheerful...is it alright to feel VERY FED UP at times? Love to you all. Granny Moss

8

Oh, Granny Moss - it's fine to feel fed up MOST of the time if that's how it takes you! It does get easier as time goes on and you adjust, but I must have been the grumpiest person on earth for some time.

I still have some weight to lose - if it ever does go now - but I am a lot more cheerful these days.

Nefret

9

Hi Mariarita,

The ESR and CRP are two ways of measuring how much inflammation there is in your body. The ESR - erythrocyte sedimentation rate - is the speed at which the red blood cells sink to the bottom of a tube. The faster they sink, the more inflammation there is. The CRP is a protein found in the blood and if you have inflammation the amount in your blood goes up. Neither of them is 100% accurate - mine have always been absolutely normal - but for some people they show how well you are doing, or not!

Don't worry too much about the weight gain. Try to eat foods with lots of protein in them and cut down on the amount of carbohydrate as that will help some with the weight gain. What is much more important is that you feel better in yourself and have less pain. If you try to cut down on the steroids too much you may have a flare-up of the PMR and when that happens it is often more difficult to reduce the steroids the second time round. We said recently that it was better to be cuddly and feel well and be able to do things than the other way round!

And yes - it's perfectly OK to feel really really fed up! We all do at times - but you can always have a moan here and we'll try and cheer you up - we DO all know what it's about and how much PMR messes up what is otherwise a perfectly good day. And you can guarantee when it is important you feel good - you'll wake up feeling as if you have 3 left feet and it's the end of the world. Happens to us all!

Delighted your practice has turned up trumps, if a bit late,

all the best, EileenH

10

Mariarita

I really have nothing to add to the advice my mates on here have given you.

However if you visit www.pmr-gca-northeast.org.uk and click on Useful Medical Information and then read the BSR Guidelines issued June 2009 you can read all the information on diagnosis and treatment of PMR.

There is also help with nutrition, exercies etc. People's stories, support groups and other useful information.

One thing there is, currently, no known cure or cause. PMR has a mind of its own, it comes and goes when it wants. The prednisolone is not a cure, its to reduce the pain and stiffness and enable you to carry on with a, albeit changed, life.

With a bit of luck and a fair wind, it might just up and go within what the medics tell you - 2-3 years. The aim is to get the prednisolone down to a level with which you are comfortable.

Good Luck.

11

Hello Granny Moss

Pleased you had a good response from your Dr I think the more you know the better as the Dr then realises you know what treeatment you should be having

You have to have your blood pressure checked, diabetes checked for ( unfortunately weight monitorred !!) Dexa bone scans ,your eyes checked for Glaucoma ,cholestral and this time my Dr gave me nearly every blood test there was !!

Try not to worry too much about the weight now For me steroids have done me far more good than harm and I can remember how useless I felt when I wasnt on a high enough dose I was upset at first about my weight but I have tucked away the too small clothes and now have a smaller working wardrobe of mix and match things and look forward to the day I will get back into the other ones The more you try to rush the reductions the more you could set yourself back ( I am speaking from experience after setting myself back a year in my haste I have decided this is a Marathon not a sprint !!

Best wishes

Mrs G

12

Hello again friends in need!.... Thank you again for your replies. Now I know what ESR and CRP are, I shall be able to discuss with my doctor without making too much of a fool of myself....

Today is the second day that I have my scaled down dose of Pred, from 7 1/2 mg to 6. I have felt some pain in my arms, hands, some passing headhache, and feel a bit confused in the head....I have been up to the City...by bus. Done some shopping, and then home. By then, I do not think I cared much for Christmas or anything else....I have had a scumbled egg on toast a cup of tea and I am ready to throw myself on the first bed that is available...as soon as I manage to climb the stairs.....

I try to be brave about all this,and I have found the most lovely fellow sufferers on this site. I think I am very lucky and hope I will not be too much trouble to you all. Thank you again. Granny Moss (this is what all the family call me...even my son and daughter....)

13

Hello Granny Moss,

You sound just like my Mum and I love you already :hug: ! I have the feeling you will be OK - you sound lovely. Do hope you feel better soon and enjoyed your scumbled egg (must try that some time, sounds delicious). Take care and keep well.

Lizzie Ellen

14

Granny Moss - don't try to cut down from 7.5mg every day to 6mg every day straight away - at least take the old dose one day and the new one day, alternating. Even that may be too much and you might need to take the old dose for 2 days, the new for 1 day and then the new for 2 days again before trying the new dose again. I know it sounds so complicated - but if you want more advice we can give it you in more detail. Trying to go down in a bump may bring the PMR back - and you don't want that!

EileenH

15

Hello Granny Moss

Yes, as Eileen has said, do go a little more slowly with your reduction - 7.5 to 6mg is generally a bigger single reduction that most of us on here would make and certainly not recommended in one go every day. At a dose of 7.5mg most of us would probably have attempted a 1mg drop to 6.5, and some only a 0.5 drop, perhaps alternating the dose each day for the first week or so.

I expect by the time I send this you will already have thrown yourself on that \"first available bed\".......hope there wasn't anybody already in it! :oops: :lol:

Very best wishes.

MrsO

16

Hello Granny Moss

Hope you had a good nights sleep !! It is such a busy time of year that we all need to rest as much as possible

I think judging by others posts you are worrying us a bit with your eagerness to get off the steroids ( we all want to do that but some of us have realised that at times we have been to hasty Me !!)

My Dr always says if I am going on holiday not to reduce at that time as all the extra work and travel stress take it out of you and Xmas particuarly is also very stressful for a lot of people I have been carrying lots of things in the last few days and can feel it around my shoulders and wrists I went to a Charity shop yesterday to drop things and it had moved !! so I ended up walking with a sack as big as Father Christmas's and a box !! My hairdresser is also collecting for an animal shelter and I got a bit carried away buying cat and dog food !! and the Xmas tree and extra shopping !!! so today will have to be a bit of a rest day

Take it easy today

Best wishes

Mrs G

17

Hello girls....I'm afraid the bed was empty...anyhow, at my age it is more like \"thanks for the memories\"....I had a good night sleep. Eileen and Mrs O. I read your comments and advice. I was a little worried, having dropped from 7 1/2 mgs to 6. It is 6 days today that I have done so. I feel a little shadow pains...but I am going to sit it out and see what happens. I would like to keep on this dose at least until the New Year ? But as you both said, if it does give me trouble, I will up the dose back to 7 for a few days.I will from now, make a note day by day of the dosage, and that will perhaps be of help.As you said, listen to the body...I think you may like a little poem I wrote some time ago? It is WINTER FROST....

Oh winter how you linger

how still the winter air...

The fields a sleep under soft snow,

are waiting for the lazy sun

to set the daffodils aglow !...

How still the cloudless night,

with distant stars so sharp and bright,

and not a stirring sound below....

For winter has gripped tight

all living things, in frozen snow.

The softness of the air

around the dormant fields,

where flowers of the wild abound,

will herald in the spring....

Long winter nights have gone now,

the coldness in the air....

The lazy sun's awakening

will fade away all fears.

I do hope you will like it...I am trying to help us all to look forward to better days and find , even if only in words,something to confort us.Granny Moss.

18

Oh Granny Moss - thank you for \"Winter Frost\"....our forum has now got its very own poet laureate! The words are beautiful and so apt in our current climate.

As to your suggestion of starting to note your daily dosage, several of us keep a diary of our dosages, blood test results and how we are feeling (I keep mine updated on the computer) and it can be very helpful to look back on especially if the Dr has a lapse in his records! :roll: :wink:

Have a good day.

MrsO

19

:cry: I have had the computer playing up, because I am so very tired or confused I keep pressing the wrong keys ...and all my work keeps disappearing...so, I am giving up....go and have a nice cup of tea...and come back tomorrow....all the best to you all, Granny Moss.....

20

Good morning everybody :!: :?: I am in my 7th day of taking 6mg Pred. I feel very very (I mean it twice...)tired, a bit achey :?: (spelling not my forte...) but managed to wash and dress myself, and had breakfast. I have noticed that in your messages, no one mentions the gastro blocker Lansoprazole 15mg, which I have been taking with Pred. from the beginning. I believe that one of the side effects could be, my dizziness (wobbly...)I have been taking medication since July,and I was put on 20mg Pred a day. I am now down to 6mg a day. Is that a bit drastic? If I can cope with the wobblies and a bit of pain, can I carry on on this dose ? Or would it cause some harm ? I HATE going to the surgery, expecially at this time of the year. I probably come back having caught something more nasty....I do not have a flu jab...so,when I go out, I wrap a scarfe up to cover my nose....so that any germ will be filtered :?: .....and I suck HALLS strong pastilles...and I took a sprey on the bus, and if anyone cough I sprey from under my legs.......a couple of squirts...I feel so tired and wonder if I will see the winter out......The lack of sunshine is beginning to be felt in the bones.....Last night, a few lines, simile to a limerick came to my head... Here they are....

I have a disease problematica

it's called Polymyalgia Rheumatica...

it comes and it goes

but nobody knows

the cause

of Polymyalgia Rheumatica

a nasty disease problematica.....

That's all for now ! Granny Moss.