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

[i:3c5fd69786] 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.[/i:3c5fd69786]

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

[i:5071724855] :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.....[/i:5071724855]

[i:b158e8ad2b] 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.[/i:b158e8ad2b]

[i:d46b888f6e] Dear BettyE and EileeH, I am so sad...This morning I have some pains back, in my arms and hands. I managed to wash and dress, but I feel the pains. As I have come down from 7mg to 6, for a week now, I wonder if my pains are coming back ? I do not think I could survive another lot of THEM....in fact, I am finding this winter very hard to cope with....I think the problem could be STRESS. I have a husband that is worrying sick about me. He had a stroke some years back, and he is taking medication. Also, he is coeliac, and has high blood pressure to keep under control. And...he is 89.....so, quite a lot of negatives to contend with....He is afraid of displeasing me, and when I am quite in my corner, bothering nobody, he gets upset because he thinks that I am angry with him, that he has done something wrong...and when he asks me if I am badtemper...I hit the roof....we both end up having terrible stress....and feeling quite unwell...It is a vicious circle. No matter how many times I tell him I am NOT bad temper but I get VERY bad temper when he asks me....he does not seem to understand...My daughter is a qualified Counsellor...but I do not think she is much good at it....she is mad on her dogs and horses...and a vegeterian would be Buddist.....My daughter in law, she is a ward sister at the local hospital. She is very kind, but full of text books theories.....I would not want to start a discussion about my PMR with her.....The only sensible advice so far that has made sense to me, is the advice I have found from my fellow sufferers on my site. Please help me. Can I try another day at 6mg.Do you think that stress can set me back ? Do I have to up the dose by one gram tomorrow morning? I do admit, that with 6mg I do not feel so wobbly...I will await your kind replies. Thank you again. Granny Moss.[/i:d46b888f6e][i:d46b888f6e][/i:d46b888f6e]

Granny Moss - we have come to the conclusion in the past that if you are trying to drop your steroid dose and have some pain that starts after the first couple of low doses but gets better over a week to 10 days, then that was just getting used to the lower dose. If you have pain and stiffness that gets steadily worse over that time, then it is that the dose is a bit too low and the higher dose was better for you.

It is unusually cold in the UK - most people found that difficult last year. Perhaps the DVD that you can get from the pmr gca uk northest support group (see on their website) might help to explain to your husband what is going on? It is designed to help friends and family understand PMR and how it affects you. And you are probably right about your nurse DIL - my daughter is a nurse and was quite difficult about understanding! :roll:

EileenH

[i:e5aef2eb2a] :D Eileen, THANK YOU ! I feel much better now. Will you let tomorrow if I will be OK. Just now, I have a chicken in the oven...and wiil have to get lunch ready.....I will have a nice glass of wine with it...is it allowed ? At soon. Granny Moss.[/i:e5aef2eb2a]

Mariarita

Not that I am wanting you to become an alcoholic, but I have just had a large brandy with my coffee.

Who cares, its thawing and they are promising us no more snow till Wednesday.

Brandy Queen aka

Hi Granny Moss,

As the others have said, listen to your body and don't try to get down the dose too quickly...I was diagnosed at the start of April this year and so far am only down to 12mgs a day since last Monday.

I have a few aches & pains back, particularly in my shoulders , but I'm going to give it another few days before resorting to going back up again.

By the way, am I the only one who was blissfully un-aware of how hard it is to dress when you can't lift your arms above elbow level :roll:

Until I got PMR I never realized how difficult such a simple task as putting a bra on could be & even contemplated going without....not a good look for a D cup though :oops:

hope you enjoyed that wine with your chicken...we all deserve a little treat.

very best wishes, Pauline

Hello Pauline

I know exactly what you mean about the bra !! You struggle for ages to get your arms up that far then find your wrists are too tired to do the necessary fixing and give up until you find the energy for another try !!

Happily for me that isnt a problem at the moment

Had plenty of Christmas cheer last night so a quiet day today !!

Hello again Granny Moss hope you are resting a bit today yes I do live in a nice village right in the heart of the New Forest with ponies cattle sheep wandering all over the place It is very busy in summer as we have lots of holidaymakers here We then go to our land in the forest with our horses and lock the gate !! Very peaceful

Keep reading as much as you can and dont try and go too fast at this reduction plan as I am sure this cold weather doesent help us PMR sufferers I certainly had a real setback in Jan/Feb this year and it is terriblly disheartening to go back to square one

Best wishes

Mrs G

[i:cd80154719]Dear Dublin Ireland and Mrs G. I am back...Having had to put all the dinner back in the oven at lunch time...because unespected visitors called.so I quickly made a lot of sandwiches....and then they had mince pies and ice cream....I was having a bad morning with the pains...and the wobbles...and as we all know, we do not look sick? to outsiders....!...But as soon as they had gone, I threw myself on the settee....and did not move a muscle for at least half an hour....It was not all bad, because one of the \"visiters...\" when I shown her the medications I was taking, found out that the Chemist's description label stuck on the box, did not match what was in the box....and I was taking 2.5 mg Pred tabs with gastro blocker, and the others without...and it is all wrong, because I am taking 15mg tab of Lansoprezole which is a separate gastro blocker....I shall have to go to the doctor tomorrow and clear all this mess. I am sorry to confess that at times I feel as if I have come out of my old body...and entered into another body, which seems to fit me badly....as it is much larger than the one I had....And all the RAGS in the wardrobe, they do not belong to me...because I can hardly get into them.....As for putting on a bra, I do up the hooks, and then put it on overhead like a camisole....it works for me....knickers are another matter...I put my derriere agaisnt the wardrobe, then, knickers in both hadns,I bend down with legs straight, and I lift one's foot toes and put the item through, put the toes down and lift the heel and pull through...then repeat with the other foot, and pull the blessed things up....I hope all these gimmnastics help me loose some weight....Tomorrow I will take 6mg, because although I was feeling unwell during the morning and had some nagging pains in my arms and hands, I seem to be OK now...I hope to stay on this dose until next January....if I last that long..... :roll: I am going to watch a movie on DVD now, and make my husband miserable, because he will NOT like it. :evil: ..and he will have to go and play solitare on his Computer.... :lol: All the best for now. Granny Moss [/i:cd80154719]

Granny Moss I do hope you are less sad by now. I am now on my 11th day of 6.5 and am less achey than three days ago but it does seem to take time at each reduction. I used to become disheartened if it hadn't settled inside a week but have found I can afford to be a bit more patient ( doesn't come naturally;impatient, bossy Aries, me! ) but GP said to give it ten days or so, as do others on here.

It has taken me two years and ten months to get from 15 to 6.5 so you are by no means slow and perhaps, just maybe, a bit too fast. Don't lose heart;it is not a smooth ride. As for being in another body! How many times have I said, \" If only I could have my own legs back\"!

Having been trapped at home for three weeks, we finally ventured into the town to replenish stocks on Friday. I was dreading it, what with the ice and cold and didn't think my legs would hold up. When we got back felt very tired but that night had a really good sleep and since then have felt better than for months. Maybe the legs benefitted from the exercise and were weak from the inactivity That's what is so difficult to judge, I find; what is beneficial and what detrimental. So, you see, there are sometimes pleasant surprises. Suck it and see seems to be the motto.

I am afraid I have been ruthless with entertaining; I just don't and people have just had to accept that and have. It took time as I, like so many on here, have always been regarded as a coper. Ask a busy person when you want something done and, in the past, I was glad to oblige. Now, I am not a busy person, I am a person with a debilitating, painful illness so please ask someone else. Don't be so obliging. Look after yourself.

Just to end on a lighter note; here is a Christmas cracker joke.

What is another name for a couple of thieves?....... A pair of (k)nickers.

[i:98d9090513]Dear BettyE,how kind your comments !I love the Christmas joke.After the \"Visiters..\" had gone, I had a rest. Watched \" Blizzard\" a Christmas movie (children's) and then went to bed at about 9pm. At 3am I was awake,stomach churning...so, hubby and I as usual got up and had I cup of tea & biscuits...(that's how the weight grows...) Went back to bed..and it was a shock when I woke up at gone 8am ! I took my calcium tab and then had to wait at least 20 min before any food...I am here this morning to ask advice. I have been down to 6mg of Pred for 8 days now, and I have noticed that first thing in the morning, the old pains seem to be creeping back ( they are much, much less and I dread giving in and going back to 7mg Pred) On this dose, I am less dizzy.Dear EileenH and many other friends, are going up and down with the dose, but they seem very self confident ladies and much more assured than I am. (I think that I may become a liability to this site..) I love to belong but do not wish to become a nuissance. I am going to give it another few days, at this dosage and see if I can win over this rubbish body I am in at the moment........I know that inside this old \"Body\" there is a lovely young girl....still full of ideals and dreams....dancing on a meadow, in spring...amongst the daisies and the buttercups....and so carefree.....I assure you, I am not at all so nice....when the old joints ache...I use some very choice words that I have learnt when working at HQ 8th Army. The boys that had fought the Germans in North Africa. I married one...and had our honeymoon in Venice !....in August 1946. Well, to go back to my question. Shall I persevere at this dosage or give in and take 7mg for a few days ? Is it wise to do so ? Or better to sit it out at 6mg and MAKE the body adjust to it ? I am going to the City this morning, and the sun is out at last ! Only to give blood to the vampires....for a blood check. On the form it says : FBC and ESR. I know what ESR is, because EileenH explained it to me, but what is FBC ? Hope to hear again soon. All best for now. Granny Moss.

[/i:98d9090513]

Mariarita

FBC = Full Blood Count

This is a difficult illness and what you have to try and remember, is that there is no known cause or cure and the prednisolone is there to enable to you try and keep the inflammation down to a livable level. There is no point in reducing for reducing's sake. In fact you can make it worse by not going up the small amount and ending up having to take a larger amount and then it can be more difficult to reduce.

PMR has a mind of its own, it comes when it wants and goes when it wants.

Life as you knew it before PMR is not there any longer and adjusting to this is hard as your head just does not want to recognise this and it can take sometime. It took me a good few months before I realised I had to learn a new way of living, go with the flow and listen to my body.

The only 'win' you can make, is the adjustment, the more you try to win the more it fights back.

No Mariarita, I do not have PMR, I have GCA but the learning curve has been steep from my PMR only, GCA only and PMR/GCA (both) friends.

Finally, no one person is a 'liability', we just do not recognise that word on this site.

We are all shipmates on the 'Polywhatsit and Giant Thingy' ship and just pull each other through this journey, we did not want to undertake, together.

Mind I would rather be on the good ship 'Lollipop'.

[i:42b699e339]I have come back from the City, where I went to give blood....They are all so kind at the Walk in Clinic! Thank you Mrs K for Full Blood Count. Does that mean they are to check for everything that copuld be wrong ? I am getting a bit concerned now...I thought that if I go along with the count of mg steroids per day, I would eventualy, eveb if it took a year, be then completely cured? My mind is so confused now...I really need the support of this site ! I have no one near, to talk about it and of how I feel. I feel as if someone has betrayed me...and I think that I shall go now, make myself confortablein my little corner... have a glass of sherry, and feel very sorry for myself !.....\" Then go and have a nice chicken and mushrooms risotto...a glass of wine.....watch a movie, and then bed. and Stay in there for the rest of the week......! :roll: Than you for all tha kindness. Bless you all. Granny Moss[/i:42b699e339]