Hi everyone I had my Doctors visit last thursday and my ECR and CRP had gone sky high along with my blood presure. No wonder I was feeling so dreadful.
When she cut me down from 15mgs to 10mgs it was far to much and far to quick. She has now upped the preds back to 12 and a half. I have been on them since Thursday and already feel heaps better. I see her again in a month to see how I am doing and to have another blood test.
I hope everyone if as well as you can be and are doing Ok. :magic:
Hi Sparkin
Yes no wonder you were feeling so bad I do think it is a bit easier for us at the Drs if we are the ones that PMR shows up in your bloods
Hopefully now you are feeling better and can stabalise a bit your BP will go down as well as you will be less stressed
If you feel worse dont wait the month just see the Dr again and quick suffering with unnecessary pain drags anyone down
Glad you are feeling better
Best wishes
Mrs G
Hello Sparklin
I'm so pleased to hear that you feel so much better following your GP's advice to increase the dose up to 12.5. As Mrs G has said, if the bad pain returns then don't hesitate to contact your GP again in case you need the even higher dose to stabilise completely.
I believe you are the second person in the last few weeks to experience being advised to drop from 15 to 10 in one go and for whom this massive drop hasn't worked......surprisingly!!!! :roll:
At least now it seems as though your GP is 'on the case' and is reviewing you with blood tests to ensure the inflammation is under control before another drop.
Best wishes,
MrsO
Hello sparklin..... 'tis me who had the same first drop from 15 to 10 and boy have I known about it :roll: :roll:
So pleased you are feeling more on an even keel.
Seeing my doc tomorrow and refusing to come off 15mg for at least three weeks and then only SMALL drops each month as I am not prepared to suffer again.... it is my body after all :?
Have printed off info for her from the PMR-GCA North east site to use as back up!!
Watch this space :lol:
The 15mg have helped the horrendous pain I was having but certainly has not taken it all away this time and it has now been five days since I started back on the higher dose.
\"Mrs G\" thank you so much for your best wishes. I always feel better after coming in here because al least everyone understands.
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fiftiesgirl so we are two with the 15 and 10, I just read your other post and do hope you start to feel better soon
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MrsO I will do as you suggest and if things go down again pain wise i will go right back to the doctor. She has said if i can not get an appoiment with her just book a phone call with her and she will call me on the same day.
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Mrs G I am less stressed this week about the whole thing, mind you i woke up this morning and my face was bloated so I guess this is the moon face I have read about here.
Hello Sparklig. Pleased you are a little better now.You stay at the mg of Preds that work for you. Your own body will tell you when to drop to the next dose. From 20mg in July I am now on 7mg. Feel much better, but of course, as PMR \"veterans\" :wink: know, never totally 100%. Always a feeling of not being completely well. For me, is the woolly head I dislike, and the feeling of being \"over the limit\" with unsteady legs....But the \"Moon\" face? Well, as I am 87, it is OK for me....it has smoothed out the wrinkles.... :lol: :P .....I may even get an \"Indecent\" proposal to pep up my self \"esteem\"... :wink: :love: Granny Moss xxx
Oh Granny Moss you always make me chuckle - \"indecent proposal\"....well Valentines Day is almost upon us! :love: :rose: :wink:
MrsO
Hi Sparklin and fiftiesgirl,
Sorry you've had a bad experience with the drop from 15 to 10. It does seem rather a fast reduction. My rheumatologist and GP wanted me to drop 15-12and a half-10, but I thought that was too quick, having read folks' experience on here, so asked if I could drop 1mg at a time, which is what I'm doing with great success so far. It has taken me 2 months to drop from 15 to 10, but I don't mind that---slow but sure.
I would ask your respective doctors if you could do the same. As you say it's your body!
I hope you both feel loads better soon.
Molly.
Hi all,
I've just returned from the doctor's. I was rather worried about the results of the dexa scan done a couple of weeks ago, because my GP has been pushing the Alendronic Acid, and up to now I have declined to take it. I thought if there was a problem with the scan, he would push it even more, however it's come back normal, and my blood pressure was better, it was rather high last time. ----One happy bunny!!!!!
Best wishes to all,
Molly.
Hi Mollycoo
Great to hear your good news - you deserve to feel like a \"happy bunny\" :ok: Keep well.
MrsO
Molly thank you........ and congratulations on your scan results and blood pressure!!! :D
Molly
I am so glad you pushed for the Dexa Scan. I keep telling the medics, why give a tablet - just in case - its a sheer waste of money. A Dexa only costs the NHS about £16 - goodness knows what the tablets cost.
How long had you been on steroids before the scan?
Hi Mrsk,
I have been taking prednisolone since 12th October. Started at 15mg and have been reducing 1mg at a time since 1st December, now on 10mg. It's such a relief about the scan, I've been quite worried about it, and wondering what to do if it came back showing a problem (whether to start AA or not) I do not want to take it, but equally do not want osteoporosis of course. I'm on a very high calcium diet to try and combat the steroid, and am hoping that will be enough. Also taking calceos supplement twice daily.
Thanks for your reply,
Molly.
mollycoo
Brilliant timing for the first Dexa scan, four months to six months into longterm steroid usage.
Mark it on the calendar and in Jan 2012 - ask for another one.
read the blurb on Your Advice please, keep a record of ESR and CRP readings and when you start your reduction, do the math. And remember when reducing try and start on a fairly clear week so you can see after about five days, is the pain going away (steroid withdrawal) or is it still there, if still there or increasing either go back to where you were and wait or increase by 1mg till comfortable. ADT only when you get down to 10mg.
Good Luck and hope your PMR takes a long walk of a short pier.
Oops
somehow I missed out, or you can try Ragnar's method, which seems to work for a lot of pmr people.
:Dear Mrs K, what does ADT mean, please ? :oops: Granny Moss.
Hello granny Moss
As Mrs K isnt on now I thought I would answer for her !! Alternate day therapy Eileen does this and it is something you have to work up to gradually If you should be on 9 mg a day you would be aiming for 18 one day and noe the next but you would have to start slowly 10 one day 8 the next then 11 one day and 7 the next 12 one day 6 the next and so on till you got to the 18 and none
The idea behind it ( Eileen knows all the technicalities !!) is to shock your adrenal glands into working again as in some cases long term use of steroids stop them working and they produse their own steroids and help you deal with stress
I did think about trying this myself but I was a bit worried about rocking the boat and have just decided to go on a very slow reduction programme instead
Hope you are feeling Ok today I love all your little jokes and comments I have always been drawn to people with a sense of humour Not keen on people who are too serious especially if ther main interest in life is themselves !!
Didnt have a very good start to the day Fell out of bed !!!!!!! I will explain We ( or I should say my husband is !!) decorating our house from bottom to top ( did the bits people see first !!) and we are in our spare room and the bed is smaller , the alarm awoke me with a start ( its on the opposite side of the bed ) and I turned over and ended up on the floor to my husbands surprise !! Luckily it is a very low bed unlike ours
I dont think I have done any harm apart from the shock !!
Boring day today domestic chores and shopping
Have a good day
Mrs G
Dear Mrs G ! Falling out of BED ? :roll: All those exercises should only be attempted when you are on safe ground. :P
I am glad you did not hurt yourself, as none of us wants to have to endure extra pain to the lot we already suffer. It is extremely difficult to maintain a sense of humour, with the \"blessed\" difficulties we come across in our daily life....My husband (89) tripped over a footstool in the living room. Hurt is side (ribs ?) and was going on so much with the pain, I got fed up and called the doctor. She came, and asked him to lay on the setteee. He went over while \"dropping his trousers ?...and promptly tripped over them and fell over and flat on the settee...The doctor looked at him and said : There you go again !...and we all fell about laughing....What else could one do ? :roll: Love . Granny Moss
Dear Mrs G and Granny Moss
I really feel guilty giggling at other people's misfortunes but both of you have really made me chuckle this morning with the vivid descriptions of your antics:lol: But seriously Mrs G I do hope you haven't hurt yourself. :shock:
I, too, had a rude awakening at 5 am when the new burglar alarm went off - hubby actually slept through it :roll: and left it to me to chase anyone away! Checked and everything was secure but I couldn't go back to sleep so with friends to dinner this evening I am going to try and have a cat-nap :cat: beforehand. Off to dust the bits that show now! :wink:
MrsO
Mrs K,
Hi again. I asked the radiographer about future dexa scans, and she said another one in 3 years time, which I thought was rather a long time, but she said any deterioration bone-wise is very slow. With a bit of luck and the wind behind me I may be off steroids in 3 years time! That would be good. Reduction is going well so far, 1 mg at a time, 15 days on each amount. I'm told it gets more tricky when reaching 7.5, but that won't be for a couple of months yet. I'm not pain free, but I don't expect to be with this problem, and it's nothing I can't handle. Sorry, but what's ADT? I am on 10 mg at the moment, in 10 days time down to 9 all being well.
Cheers,
Molly.