Day..

[daworm]

This 13mg isn't hacking it..useless hands every morning...plus more stiffness in other areas than usual...almost at the "really pissed off and cry in the shower" stage...oh well..usually bad days are followed by at least one good one...still on the right side of the grass..or should I say snow...

[PMRpro Ambassador]

Has it ever occurred to you that you have a good day after a bad day because you rested your hands more?

[daworm in reply to PMRpro]

yes but I'm hard headed..they (wrists, hands) ache almost the same every morning, doesn't make a difference if I split my dose, if I've exercised, doesn't make a difference, the only thing that makes a difference is time...around 1:30 pm I loosen up and can use them "almost" like normal....starting to think more like LO RA is just as likely...oh well..on we go...

[Hidden]

Ohhhhh bummer! ...although I do love the idea of Wolverine Blades!!!!! Sorry the 13mg isn't cutting it. Cry in the shower. Rage against the disease... tomorrow is a new day.

[daworm in reply to Hidden]

I did rage, as in I took a long walk on a sunny day, it was even warm out, almost 20F...talked to some people on the walk, meandered around, home now, having a beer ( and I don't give a shit if it makes me go into violent spasms) and soon supper...pity party over for the day!!! You know, I've done the "go without alcohol" and the "don't drink coffee" for numerous days in a row already...seems to make no difference in the evolution of the disease on a day to day basis other than depriving me of some pleasure, so to hell with that....one beer, maybe two, not often though...and coffee a couple times a day at most...Tea a lot...ginger tea, green tea, moringa(?) tea...

[Soraya_PMR in reply to daworm]

I drank alcohol last night, and felt rubbish this morning. In the non-PMR world I believe it’s called a hangover

LOLOLOL!

Does heat help your hands? What about wearing some light cotton gloves overnight? They sell them in chemists, probably to keep hand cream on or for some cosmetic reason. Or you can get hand/pocket warmers (like little bean bags to heat in the microwave). Just thinking if it’s PMR pain, mine usually likes a heat pad ( or red wine )

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

Hi Soraya,

Pray tell..what’s a hangover! Other than a build up of inflammation😏🤨. I had a GP who said her “go to” cure was antiflammatory medication! But then as an ex nurse you probably know that!

Bit early for me...11 am on a Monday morning...but as the old song goes..It must be 5 o’ clock somewhere!

[Soraya_PMR in reply to DorsetLady]

Ha! You make a good point. My cure was a lie in (didn’t get to bed til 03.30) my head was actually fine, just a bit dithery and nauseous. Cured that with a Cadbury cream egg!! It’s been looking at me for weeks, to hell with it, damn impertinence, the thing should have hidden away knowing I’ve cut sugar out! But it did the trick, that and an afternoon snooze.

Cancelled my nursing registration last week! I finally accept that I shall not nurse again. So yes, officially an ‘ex-nurse’ soon. (I could resurrect it with a back to nursing course, but that’s not likely, nursing is a different beast compared to the 70’s when I trained).

And it’s 10.45pm here, the sun is definitely over the yardarm

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

Not a hangover then, just a headache from lack of sleep! Well, that’s usually my excuse🤦🏻‍♀️. Actually just going to make a coffee - very restrained! Too much caffeine!! Oh no....

You can’t win, but I wouldn’t mind coming second sometimes 😏

[daworm in reply to Soraya_PMR]

Got a couple of those sitting on the desk downstairs right now..that is if the wife didn't get to them..well, actually they were bought for her..

[Soraya_PMR in reply to daworm]

CCeggs? Ooh! Dare you risk a steal???

[daworm in reply to Soraya_PMR]

I don't know....stealing chocolate....maybe not a great idea!!

[testadura in reply to Soraya_PMR]

Once a nurse, always a nurse! Since the '70's? You must be a fabulous nurse.

[Soraya_PMR in reply to testadura]

Thank you testadura !! What a lovely comment as my first read on Monday morning

Today my son’s GF is visiting, she is a nurse in ITU, we compare notes! I love that she advocates for her patients and is prepared to go into battle for them! She’s quite ‘old school’, I like that!

[PMRpro Ambassador in reply to daworm]

I feel the same daworm! If giving something up made me feel better I wouldn't mind. Haven't found anything yet though!!!! But I do enjoy a glass of prosecco...

[daworm in reply to PMRpro]

Oh, I know, I've tries abstaining from both coffee and alcohol for a few days to a week...no noticeable difference to me....now I'm not talking five beers or drinks a day or coffee all day long...even my Dr. said "hey, you gotta live a little"

[daworm in reply to daworm]

But snitching CC eggs from the wife?? Bad bad idea!!

[PMRpro Ambassador in reply to daworm]

Probably OK as long as you buy her more...

[Rimmy]

Hi daworn

It looks like you have only been on Pred for 4 months ? - but I am not sure of your history - is it possible you have just tapered much faster than your body 'likes' and have you been checked for RA or other possibilities ? Anyway if you are in a lot of discomfort it would be good to get this sorted out rather than try to put up with it - 'quality of life' is what we are all after...

Best wishes

Rimmy

[SheffieldJane]

Sorry that you’ve hit a low daworm. The good day that follows is probably because the pain has forced you to have a rest day. Build them into your routine so that you can choose when to have a good day. Perhaps try a couple more mgs for those poor hands. The snow is not helping.

[daworm]

Thanks to all for the replies and helpful info....4 months seems like an eternity to me but knowing the disease now, it really isn't that long...perhaps I should have stayed at the sweet spot of 15-16mg for a bit longer...what's the rush, the adrenals have probably shut down a month ago....actually feel pretty good tonight...if I could figure out the dose that works best when splitting to alleviate most of the morning pain & stiffness that would help..I only take 2-3 mg around 1:00am and I'm not sure that's doing much....

[Soraya_PMR in reply to daworm]

I’m on 11mg, I take 5mg between midnight &2am, much better for my morning stiff hips, and 6mg when I get up. (Did try taking all in wee small hours, but it made my evenings rubbish).

Generally advice I’ve seen here is 66% morning and 33% wee small hours. But as I’m back on gastro resistant I can’t cut them, so I’ve just gone with what’s easiest.

[daworm in reply to Soraya_PMR]

thanks...I think I'm upping the first dose I take "around" 1 - 1;30...

[daworm]

12hrs later I look at this and say to myself "what a whiner" haha...as they say, things can change with PMR day by day or hour by hour, mentally and physically!! Bedtime..zzzzzzzzz (I hope)

[Maryis80]

I had the same problem at 12½mg so the GP said to go back up to 14 for a while. Now been on that for over a month and hands much better. Due for a blood test tomorrow then see her again next week. As we go on holiday a few days later, I shall tell her that I am not prepared to drop down until we get back!

[ClaudeV in reply to Maryis80]

Had exactly same experience. Diagnosed 2months ago. Started at 15mg, went down to 12.5mg even 10 for 1 week. Then my hands and feet became really bad. So back st 14mg. It has been 5 days and

feet are better already. I hope hands and fingers will follow...thanks for sharing