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PMRGCAuk
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HONEYMOON is OVER!

HONEYMOON is OVER!

Well. It was nice while it lasted. When I started the Prednisone a month ago at 30mg I thought WOW! This is not so bad. I feel GREAT! Full of energy. Not so hungry. Still strong! I'll exercise like Gillian on The Biggest Loser! Well... alas. I guess a month is about right? Last few days. UNDERSTAND perfectly the "spoon theory" and have run out of them everyday. Also I can SEE my face is getting just a little fuller in my cheeks...(that might not be all bad..fewer wrinkles?) AND I am STARVING! Sound about right? I'm now at 17.5 mg. for 5 days from 20. Maybe went down too fast?? Today is my grumble day. Sorry! (I am GRATEFUL however to still be learning funny English phrases..give me some more! and GRATEFUL not to have something worse! and GRATEFUl for you all.

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Lovely, funny Post, yogabonnie (if a bit ironic!) :-)

Yep, what you describe about starting on the 'magic' steroids sounds about right to me. Steroid 'Euphoria' (i.e. suddenly feeling like Superman /woman) is a well-known by-product of being on this drug at first. But, as I'm sure The Aunties here will confirm, it can give you a false sense of security energy-wise. So, be careful with those precious energy 'spoons' ;-)

As for learning (and understanding?) English phrases and 'slang' / colloquialisms: I'll put good money on it that this will be far more painful for you than anything else! :-D

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No wrinkles on a balloon - pred is cheaper than botox...

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LOL!

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Yes but I now know (6 months off pred and counting) what I really look like and when I look in the mirror now I can see my granny! Carry on moisturising.

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I look like my mother - not amused. I used to look like my daughter...

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Me too😞

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You’re lucky, I look like my Dad...before a shave! 😏

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hahahahaha

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I went through that phase nearly 6 years ago when on Medrol! Never again!!!!!

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Hahaaaa! I can laugh about it now. Nice to have the wrinklies back again, though.

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Ha ha! Tell me about it. It is cheaper than a perm as well.

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I found two good results of prednisone! 1. Made my hair curly 2. We were snowed in last week and I reorganized every spot in my house with all that energy😳

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Been there, done that. I was marching along feeling like I was kickin’ it. Got it licked. Then I flared. Ahhhh. So THIS is what all the fuss is about. Plus, exhaustion is a constant companion.

Regarding the hunger, have you gone low carb/no sugar and watch the salts? That helped my curb my cravings. Will also help keep Pred weight off and may help keep diabetes at bay.

I told a coworker that I think I can feel my cheeks growing. I really think I can feel the cells growing.

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I did no sugar no salt for the first month and this month of Dec..have failed. I am however...back to it as of today! thanks. AND yes! you can feel the cells growing. And silly.. I'm Vain? at 71? no need. Invisible woman.!!

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Not invisible on here! The rest of the (younger) world might be oblivious of us oldies, but they don’t know what they’re missing! One day, one day 😏

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Small aside: Have you seen Grace and Frankie on Netflix? They address the "invisible woman" phenomenon in one early episode. Hilarious show if a bit...non traditional.

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love it and if JANE FONDA and LILY TOMLIN are invisible how could I care if I am!! (sometimes a good thing!)

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I do so know what you mean about the honeymoon being over. I think I had mild euphoria for about 6 weeks. My GP prescribed Atenolol for raised blood pressure and immediately, no more euphoria. Like you, the downside of Pred began to be apparent. Still, I remind myself I was shuffling around, I needed help to get out of bed and some chairs, I could not get in and out of a bath. I could not raise my arms higher than my waist. I had a mild fever and felt it. I thought I was done for. So God bless Pred.

So don’t be “mardy” we do have a lot to be thankful for.

Mardy is a Yorkshire expression for the state of being a negative, grumpy person, whom you could call “ mardy bum”. 😘

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Not only in Yorkshire! ,

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I was born in Nottingham UK and knew the expression 'Mardy' as an infant 50-odd years ago. It was intended to mean 'grumpy / miserable'. As I understand things, it's still a local Midlands / Northern expression but I have no idea what our International friends here will make of it!

But if we can export some of these daft English colloquialisms to other countries (in return for adopting theirs), that's fine with me! ;-) :-D

MB

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OMG Mardy bum!!!! love!!!

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Don`t we just love a good old "mardle" on here....(chat) and none of it is squit! (rubbish)....yes, I`m from Norfolk....

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The fact that an elegant New Yorker ( sandy) has just said that she feels “ mardy” fills me with joy.

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There is a word for that in US and it rhymes with stitch🤐

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Same thing happened to me. Even Yoga was impossible. Slowly but surely you will heal. I’ve said it many times in my other posts, it took me getting sick to really start taking care of myself and putting myself first. Hang in there.

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No, not too fast, but the first few days after a reduction can be a bit trying. So as Mark says keep a count of them thar spoons 🥄🥄🥄🥄🥄🥄

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And remember you can't transfer them to the day before...

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I have kept the photos of the full-moon effect. Just so I can remember that until quite recently I didn't have any wrinkles! I told my rheumy that I can't stop eating and have to devour anything and everything in sight. He did look a bit uncomfortable, possibly checking the exit door. But as he predicted, appetite has diminished, have to push me to have more than one meal a day.

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How I sympathise with you! I wasn't diagnosed with PRA for over 6 months, and in that time I got progressively worse. I needed a contraption to get my socks on. I was scared to sleep in my bed because it was nearly impossible to get out of it in the morning, so spent my nights sitting in a chair etc. So within a few days of taking Pred, I was dramatically transformed. I got down the stairs without touching the banister, did a load of housework and treated myself to the hairdressers on that first day. I was so euphoric that I kept showing my bemused hairdresser how I could get up and sit down without any effort. I got so carried away that I must have given a demonstration of standing and sitting at speed for about 7 repetitions. I could see by the expression on the assistant's faces that they thought they'd got a right looney in that day. Obviously this euphoria was short lived, but it's never been the same going to that hairdressers since. Although I try to put the hairdresser's assistants at ease, I can see that strange look in their eye that says, "is she going to jump up and down and knock this cup of tea out of my hand? " Still, I thoroughly enjoyed the freedom of that short lived experience and hope that one day we will experience a Pred free time and be back to functioning normally.

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Wonderful story!! Exactly how it was for me...racing around saying wow I'm getting SO much done. (shades of the '60s cramming for exams over night!)

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😂😂😂

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From one mardy bum to another, I get the steroid false sense of security. I’m in Boston eating everything in sight. 2 holiday parties later, I slept 10 hours...probably because I overdosed on carbs and sugar. Back to NJ today, following spoon counting, strict food monitoring and taper fright 6 months trying to get to 15 (started at 25). Pred head, veiny arms, lost weight so wrinkles seem worse, miss Botox and fillers, and force myself to realize PMR is not a death sentence! If it wasn’t for forum friends I’d be in deep doo doo!

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Hi Sandy, I see you are in NY. I’m on LI. Ask your Dr about Actemra. I was in Your exact situation. I was able to reduce by half with Actemra and feel a heck of a lot better. PM me if you need more info.

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Thanks! I will do just that!

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Dr. said insurance only pays if you have temporal arteritis. I have PMR. I have Medicare and AARP. Do you pay out of pocket?

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Hi Sandy is it the blue veiny arms? I seem to have noticeable ones ni w but don't know if never noticed before it new thing. The ones on biceps were where worst pain was initially. Ignore if you just talking about Martina Navratilova type. Too fat for those lol.

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No clue about veins other than they scared me and wear long sleeves all the time (gloves inside make me look suspicious). I’m no longer hot in the gym with covered arms! As I age, I realize no one’s looking at me. People are too busy looking at themselves!

Let me know if you figure out more vein info and description! Smile and carry on!

I’m on the train from Boston to NJ and ate all my food! It’s 10 am and I won’t get home until 1:30!

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Have a bit of reading about mardy-ness:

wordhistories.net/2017/09/0...

Bit confused - they call it northern and then mention its use in Nottinghamshire - which I'd say was north midlands. But each to his own...

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I'm Derby born and bred and we used mardy too!

To call each other names - in a sing song voice : "Mardy, mardy moo cow"!

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My little meister as been taken badly and ees been reet mardy, a pain in th’arse.

My husband has been taken ill and he has been very moody which I find annoying.

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When I was a kid we used to laik out And take snap wi'us. I feel like I need snap all the time now. Laik/play snap/lunch

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Surely you have seen the news lately, men really do suffer more than us!!...poor luvs....apparently their immune systems are weaker than ours....yeah right.....well, that really does make them the weaker sex then!......

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We’ve got some bostin blokes on ere bab!

Birmingham vernacular for:

We have got some very nice men on here dear.

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Is it not a shame we don't have sound on the forum?

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Yes not a pillock or mardy bum among them!!

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