˚ ˛ •˛• ˚ ｜ 田田 ｜門｜ ˚And a happy new year:' ♥
Hello everyone I have not been in for a while because I was feeling sorry for my self lol and I did not want to bring my doom and gloom in to the forum with me.
As you know I have only had the dreaded PMR for a while and started off on 15 mg but two weeks ago the doctor put me down to 10 mg a day. The first week on 10 mg was a bit hard but I seem to have settled down now. the crying has stopped and I get about 4 hours sleep a night instead of 2 hours. I just had a few aches and pains for a week
My last blood test was good so I was pleased about that and in 4 weeks time she is going to take me down to 5 mg a day so all in all I feel good. Also I think when you get this PMR first you have to go through the stage of acceptance. I was just focusing on the fact that I had PMR and not focusing on the fact that the steroids was keeping the pain away.
But here we are and I feel so much more positive my glass is half full not half empty now ha ha
That was a huge drop in one go - glad you got through it.
But a 50% drop from 10mg to 5mg. My very best wishes for that one.
Normally when you get down to 10mg, the steps are taken more slowly, a drop of 1mg per 4 weeks. However you maybe one of the lucky ones and able to manage a big drop.
A word of caution, the ESR is only a guideline, it is not set in stone, in fact diffferent Hospital Trust areas, have different rates as markers. It is how you feel, not what the rate is.
All the best for 2011 and do not stay away from the site when you feel low - this is the place you come to when you feel low, happy, plain fed up, frustrated or just grumpy. We have all been there and sometimes it still happens.
Hello, Sparkling. I have had PMR since July. It strikes suddendly and it is a most HORRIBLE thing to have....I am 87, and never even took an aspirin. No headhaches or colds or anything....and now, I have this ! You will find, if you click on this site, under Polymyalgia hit me etc...We are nearly all there. I found the most wonderful friends, very kind and supportive. I do not know how I can put up with PMR if I had not found this site. Anyhow, Mrs K is very wise. The drop from 10mg to 5 mg in four weeks is a bit drastic. I was put on 20mg in July, dropped to 10mg, and now, gradually dropped to 7mg. I am now almost free of pain, but they are still nagging a bit, but I will today drop to 6mg and go : 6mg today and up to 7mg for the next two days, then drop to 6mg for one day, and so on, so that the drop is gradual and, as Mrs K said, you have to listen to what your body tells you....Even the doctor told me, you know better what you are doing !....With PMR, it is a case of how you feel, and try to go with it. Hoping you will come to the site I mentioned. You will find lots of friends there. Granny Moss. HAPPY CHRISTMAS !
Glad you're feeling a bit brighter too - hopefully that will last you through Christmas :D We all get our ups and downs, but learning to accept that we've got PMR and live with it is the first big step. And we all have this love/hate thing with steroids, but they do enable a quality of life. Doctors do seem terribly keen to get us to reduce the dose but I'm sure others on this site will help you sort out what is the best reduction for you. I got very down recently because I'd muddled up my pills and thought I'd easily got down to 7.5 mg when I'd possibly been taking !0mg. I do try and keep a very careful diary of what I'm taking, how I feel, extra factors such as stress, cold weather etc. So I felt cross with myself for being stupid as well!! :cry:
This site is so helpful - I really don't know how I would have managed without, and, as most of us look really healthy alot of the time, it's the one place to come for understanding. My present burden is husband who takes, very literally, our doctor's advice that \"PMR lasts 2 years\". So apparently I am supposed to be back to perfect health in about 5 weeks !!!!!!! Grrrrrrrrr.
Actually, mustn't moan, he's very good and just trying to be encouraging! Husband, I mean, not doctor, tho' he's OK, let's me do my own thing.
have a great Christmas, and good luck with the reductions, Green granny
Your reduction programme sounds very very fast Read all the guidelines and really annalise how you feel before going to see the Dr next time and if you feel that this is too fast say so and take some statistics with you
My Dr is great and always says do you feel up to the next reduction or if not or if I am going to be really busy stay where you are for a few weeks
I dont look as steroids as the enemy but something which have helped me lead a reasonable life while I have PMR I have been lucky only to have weight gain as a side effect apart from the sleeplesness at the beginning It does improve as you get down to the lower doses
Im glad you are feeling more possitive I always say there are far worse things that I could have but the most aggravating thing is still when people say you look so well !!!!!!!!!!!!! Shame we dont feel how we look !
Hello Sparklin. Your Christmas greeting required some patience, brilliant! Your experience with PMR sounds so similar to mine, and please, don't stay off the forum just because you feel down. In fact, that's the best reason to be on it! The lovely people on here leapt to my rescue when I was feeling particularly depressed once. Outsiders :ufo: think that the aches, pains and stiffness are the worst symptoms of PMR but I could cope with these, I found the depression , fatigue :zzz: , treacle brain (confusion) :? and weeping :cry: much more difficult to contend with. I agree with the other comments that your 15mgs to 10mgs is a big drop but 10mgs to 5mgs is a huge reduction, certainly one I couldn't have coped with. I'm thinking that your Doctor has a) never had PMR :doctor: and b) never been on steroids! I'm 'famous' for being on the slowest reduction known to man but I feel so well and I'm now down to 4mgs without a hitch (hope I'm not tempting providence saying that :lol: ). Don't forget, its you that's in charge of your body, not the Doctor and if he/she is worth anything then they'll listen to what you have to say. My best friend is a GP and he readily admits he is not an expert on either PMR or steroid reduction and is now passing on my experience to his patients. OK. That's it, I've stopped nagging Sparklin. Have a great Christmas and a Healthy and Happy 2011. :cracker: :snowman: :cracker:
Hello Mariarita I am like you and find this site amazing and such wonderful people here.
At the moment my grand children are staying with me as my daughter is moving house in the new year so it is all a bit hetic. They do know that i am not 100% well so thay are being good.
Yes i do think the drop from 15 to 10 in one go was a bit harsh I will speak with the doctor on my next visit wishing you well and a great christmas
The drop was so extreem for me and to be honest I should have realized that the doctors do not know everything ha ha. I got through this drop but am sure would not get through the next drom from 10 to 5 in one go so will hak the doct for 1 mg tablets and just go down one at a time.
In future I will not stay away from the site when I am feeling low i will come in and chat. I am sure there are many of us that fell low on and off
I copied the Christmas greeting from an email i got as I thought it was good and would look nice in here with all my new friends.
My chap (boyfriend) who I have been seeing for 4 years now drives me crazy with his fussing but sure he means well and he also thinks when the doctor says 2 years on the pill that her word is sacred ha ha.
Yes you are so right when you say \"learning to accept that we've got PMR and live with it is the first big step\" It sure is it just took me a little while.
I will have to make sure I adopt the attitude you have ref the steroids it is the best way to go. i lost sight of the fact that the pain was at bay. Yes people do say \"how well you look\" I bet some of the people who do not know anything about PMR think we may be making it out to be worse than it is ha ha. If we had a broken leg and it was in plaster then people could relate to that.
I did miss the christmas dance this year and I had made a lovely outfit for it. I was in the coming down from 15 to 10 mode and did not feel up to it lol still I will go to one for Valentines night ha ha
I just copied the christmas greeting can not take the credit for making it ha ha
Just reading that you and others also suffer or have suffered from the same things as me really does help me. And I will not be staying away from the forum again
Thank you for that wonderful 'Sparklin\" greeting - thank you - however did you copy that to the site?
Please don't give up on visiting the site when you feel down - you know we all so understand and can emphathise with how you are feeling as we have all been there and got the t-shirt so to speak.
That extra sleep will make you feel sooooo much better, I'm sure - it is nature's cure and it is cruel that we are so deprived of it by the steroids and the pain of PMR, just when we need it most.
Fantastic and so lucky that you have managed to reduce from 15 to 10 in one go! That sounds highly promising for a smooth pathway along your journey. BUT, please don't tempt fate now by doing the next reduction straight from 10 to 5. Providing you continue to feel comfortable and your blood tests remain normal, then a 1mg drop to 9 would, I feel sure, be the safest way to go, remaining there for a month before trying the next reduction to 8. I know someone who was told to reduce from 10 to 5 and she has had the most horrendous problems and is now up and down like a yo-yo. The most important thing is that you are feeling good right now and that is something to be oh so grateful for as we have all discovered when things start going in the right direction, so please don't rock the boat.
Enjoy your Christmas with your family and so pleased to hear that they are being understanding and helping out!
Thank goodness for emoticons as I'm not clever enough to produce such a lovely greeting as your's.
I am in awe and somewhat jealous of those who seem to be able to reduce their steroids so much faster than me :cry:
I started on 40 mgs at the beginning of April( query that i had GCA aswell) & got to 20 fairly quickly...but then the fun!!!!! started.
I was stuck on 15 for an absolute age and then got down to 12, but this bad weateher and a viral cold played havoc and I have had to go back to 13 again .
For the first time in about a month I had to take extra painkillers today as I was so stiff and sore...luckily my hubby was with me when I went to collect our turkey as I could not actuallyl lift it (all 7 kgs) :oops:
Think I will dose myself with Tramadol washed down with a few glasses of Pinot Grigio for the next 3 days to get me through the festivities :!:
A very Happy Christmas to everyone, Love, Pauline.
Pauline I did not realize that you could take othert pain killers while taking the steroids I'm a silly billy and here was I thinking i was going by the book ha ha will have a long chat with the doctor the end of Jan lol sorry to hear that things are not good for you today hope tomorrow is a better day for you
Don't worry - you're not the only one being slow about reducing the steroids. It's just taken me 8 weeks to get from 8.00 to 7.5 mg. :?: It's covered a period with quite a few ups and downs, stresses and strains, and maybe if I'd been willing to put up with a few more aches and pains I'd have done it quicker!! Last year I had to go up to 15mg again after having got down to 7.00 mostly because husband had 2 heart attacks, mild ones, thank God, but ti did mean a three hour drive to visit him.
So it does seem very variable on what else is going on in your life, and how much you want to tough it out or not. There does seem to be a lot of evidence, according to Eileen I think, that slow and sure seems to fend off recurrences and also those horrid blips when you feel you've gone right back to square one :cry: But it is a bit disheartening - I am trying to learn to be patient! Not easy tho'.
I bet we'll all be raising our glasses to a Happier New Year in all sort of ways! But have a peaceful and restful Christmas first - don't do too much!
Doctor, having warned me off aspirin and ibuprofen, because of the effects on one's tummy, gave me co-codamol. I certainly take it when i seem to get any extra pain e.g. have a dodgy back from time to time. It does make me quite sleepy tho' so it's quite useful at night. Paracetamol might as well be sugar pills as far as I'm concerned - useless!
Let's hope you don't need anything extra at all this Christmas anyway! Tho' it's quite surprising what a drop of the hard stuff will do to ease pain. Good excuse anyway :D :D
Sorry to hear you have been struggling I should think starting on 40 must really make it difficult to get down very quickly and also there are bugs everywhere at the moment As I had such a struggle at the beginning of Jan I felt like wearing a mask when I went out !!( As did huge parties of Japanese when we were in Cologne before Xmas one year ) !!
I always take Paracetamol as well if I am feeling a bit achy but so far so good at the moment but I am 2yrs 2mths into this bout and on3.5/4 ( I was on 4 12mths ago though before my blip in Jan and up to 15mg again !!
Just starting on the Champagne as its our Wedding Anniversary !!
♥
, fatigue :zzz: , treacle brain (confusion) :? and weeping :cry: much more difficult to contend with. I agree with the other comments that your 15mgs to 10mgs is a big drop but 10mgs to 5mgs is a huge reduction, certainly one I couldn't have coped with. I'm thinking that your Doctor has a) never had PMR :doctor: and b) never been on steroids! I'm 'famous' for being on the slowest reduction known to man but I feel so well and I'm now down to 4mgs without a hitch (hope I'm not tempting providence saying that :lol: ). Don't forget, its you that's in charge of your body, not the Doctor and if he/she is worth anything then they'll listen to what you have to say. My best friend is a GP and he readily admits he is not an expert on either PMR or steroid reduction and is now passing on my experience to his patients. OK. That's it, I've stopped nagging Sparklin. Have a great Christmas and a Healthy and Happy 2011. :cracker: :snowman: :cracker: