Messed up my dose of steroids

[EdithWales]

I have been slowly tapering to 9 mgms but the last week or so has been very bad. Yesterday I was in screaming pain in my hips and legs although the rest of me was absolutely fine in fact I felt well.

I decided I should stop the tapering and stay at 10 until after I go on the cruise on Monday. I have always taken the roofs as son as I wake up usually in the dark, today it was late and therefore light. I took what I thought were 2 fives only to find they were 2 and a half. I must have taken the wrong dose several times, they have changed the colour of the packing and having been on them nearly five years I have obviously become blasé and careless. I have no idea when it went wrong as the problem is I have spare supplies of everything.

I have put myself back on 10mgms and wonder if that’s enough.

I am seeing the Rheumatologist tomorrow and I am already in disgrace as I defied him over taking the Azathiaprin

I was going to take him a nice bottle of Tatinger, maybe I should make that 2

Ashamed and embarrassed 🥂🥂

[EdithWales]

Not the roofs, the roids

[scats in reply to EdithWales]

I did wonder!

Very easy done. My boxes vary in colour too, very confusing. Hope you get it sorted soon and get rid of that pain.

[EdithWales in reply to scats]

Thanks scats. What a total fool I am but it’s a relief to know the probable cause. Spent yesterday fighting for the trolley in Tescos with himself and arthritic knee as we both use it as a zimmer

Take care

🥂🥂

[scats in reply to EdithWales]

Go on push the boat out and have one each. I couldn't manage shopping without a trolly.

[EdithWales in reply to scats]

Trouble is I have been doing that all my life and that’s why I am where I am

Still 78 next week so it’s been worth it.🥂🥂x

[Daisychain12 in reply to scats]

Haha you’re hilarious darling xxx

[EdithWales in reply to Daisychain12]

I do hope so. I agree with you , I could do with Terry as well, lucky Angela

Perhaps we should have rules for PMRGCA partners

1 Put out drugs at the beginning of the week and put them in a neat little box

2 Don’t hog the Supermarket Trolley, it’s to be used as a Zimmer

3 Never argue

That could be a start

🥂🥂x

[Daisychain12 in reply to EdithWales]

I think it’s a great idea but my list would soon become outrageous in its demands 🤣

[EdithWales in reply to Daisychain12]

Never ! 🥂🥂

[SheffieldJane in reply to EdithWales]

4. For loved ones, Allow the horrible remarks to wash over you, it’s the disease/ Pred talking.

Ban shame it’s a useless emotion. You have done nothing at all to be ashamed of. 🍹cheers!

[EdithWales in reply to SheffieldJane]

Yes. That’s a good one. I can be vile and that’s not me 🥂🥂

[patriciawhite in reply to EdithWales]

Ha ha get a trolley each .It's only £1 and you get the money back at the end

[EdithWales in reply to patriciawhite]

It’s the simple ones that are the best and Tesco’s are free anyway

Take care 🥂🥂

[borednow in reply to EdithWales]

For some time now and certainly since the arrival of this PMR thingy, I have been asking family to buy me one of those small supermarket trolleys for Christmas. It would open up a whole new life - thundering through the village, 2 small dogs happily sitting on board. Maybe this year ........................... ?

Hope you soon feel better - do you have to tell the Rheumatologist what you did? Or get in sharpish and rebuke him (kindly of course) about the change of colours in packaging, playing heavily on the "I'm 78 next week you know" card. Might work. Merry whatsit.

[EdithWales in reply to borednow]

Thank you. The trolleys have multiple uses hence why the supermarkets have them locked. I suspect your dogs would love it.

I am not afraid of Braveheart, the dose error is nothing compared to o defying him over starting the Asothiaprine, that’s the tricky one. My husband comes with me but he always walks in late and

they then have sage discussions about my blood results.

The smart move might be to give him the champagne first and I can wax lyrical about the bouquet before I have to confess and himself may have emerged.

Will report back

Take care

🥂🥂

[borednow in reply to EdithWales]

Now, here's a tip for those interested. My local Morrisons doesn't lock it's trolleys anymore. That's the good news. Unfortunately said local Morrisons is a long way away from me (certainly a car ride) so even if I managed to get myself there, I fear the long push back home would be just too much. Curses.

Look forward to hearing about your visit to Braveheart.

[EdithWales in reply to borednow]

You are just going to have your own 🥂🥂

[Hidden]

Sorry to hear that but you are in good company!

I sort mine out on a Sunday morning for the week, without distraction & now Terry checks my Daily Pill Box to see l’ve taken them!.......

Definitely go back to 10mg & enjoy your Cruise, you deserve it! 😘🥂🚢

Love Angela 💕

PS one of my boys calls them Roids too!

[EdithWales in reply to Hidden]

Thanks Angela

It’s good to know I am not alone. I am going to be much more careful in future.

The cruise is the Canaries over Christmas so should be amazing. I will make sure I have your share of wine.

Love

Rovena xx 🥂🥂

[Hidden in reply to EdithWales]

Please do 🥂 are you taking Dr H?

[EdithWales in reply to Hidden]

Of course, who else do you think carries the suitcase? This will be the first time forever that he is not working and it will do him good.

I am sure you will have a wonderful time especially with baby Charlotte 🥂🥂xx

[DorsetLady PMRGCAuk volunteer in reply to EdithWales]

There’s no need to drink other’s supply of wine thank you, I’m going to son’s for Xmas and intend to have my own share 🥂🥂😊

Hopefully 10mg will get you back on track, but get yourself a dosette box for the new year, and do as Angela and many others (inc me) and sort your tablets on the weekend when you can have 10mins peace and concentrate.

How would we manage shopping without the trolley!

Enjoy your cruise 🛳

[EdithWales in reply to DorsetLady]

Thank you. I think the wine comment was for Angela, she is off it so I am doing her a favour. I know you can look after yourself!

I wondered about the box and taking the pills out of the foil but if you are all up to it I will have a go. Save me fiddling around in the night, dropping them on the bathroom floor muttering mild obscenities Just make sure you have a fantastic time

🥂🥂x

[DorsetLady PMRGCAuk volunteer in reply to EdithWales]

Ok. I really shouldn’t indulge too much - have hip op booked for 10th Jan. But I’m sure a drop or two won’t hurt!

Boxes are airtight - and as you say so much easier than faffing around each time!

[EdithWales in reply to DorsetLady]

You have time to recover by the 10 Jan 🥂🥂x

[DorsetLady PMRGCAuk volunteer in reply to EdithWales]

Oh....go on then 😂🤣🥳

[EdithWales in reply to DorsetLady]

I admire so much about you but mostly your unnerving resolve. Go for it🥂🥂x

[Daisychain12 in reply to EdithWales]

Oh Edith me too. Xxx

[stellafmdm in reply to EdithWales]

Nearly forgot mine this morning, saved by seeing the pill box on the breakfast table under my nose and checking on the Wed. slot !!!

[Daisychain12 in reply to Hidden]

I need Terry!!!! Xxx

[PMRpro Ambassador]

I'm sure everyone has done it at least once for some reason or another! Yet another reason for a multi-day dosette box. Which you sit down and fill with no distractions to encourage errors...

OH gets the shopping trolley - drives me nuts as he crawls around the shop. I like to be in and out in the shortest possible time...

[EdithWales in reply to PMRpro]

Just got back from lunch with friends, I nearly cancelled but guess what ? the correct dose of roids worked and other than a bit of backache I am fine.

Himself is very relieved because he has borne the brunt of this with him neglecting me and saying I have been misdiagnosed. All the time I have not been having the right dose. I have no way of knowing how long this has been going on but certainly in the last week I have been taking 5 instead of 10

I do have to be more aware of Pred Head 🥂🥂x

[PMRpro Ambassador in reply to EdithWales]

Funny how enough pred works a miracle!!!

[EdithWales in reply to PMRpro]

Yes it’s amazing and all you have to do is take the correct dose🥂🥂

[PMRpro Ambassador in reply to EdithWales]

[Daisychain12 in reply to PMRpro]

Aren’t they maddening. Wafting about in a dream!!!!

[scats]

I have just recieved my latest lot of 5mg pred. For some reason thy send 100 tablets when I order even tho they usually come in boxes of 28. This time I have 3 bottles each of 28 and a yellow packet of the remainder. My existing tablets are in a pink box, the yellow box normally contains 2.5 mg.

Do they fully understand pred head?

[PMRpro Ambassador in reply to scats]

FULLY understand? They probably don't even know it exists!!!!

The UK is crackers - my pred comes in original packaging, mostly supplied for 4 weeks or 30 days. Which makes a bit more sense...

[scats in reply to PMRpro]

Each surgery seems to have it's own method too.

I used to organise all my mum's tabs but if not in their orrigional packaging hospitals and care homes won't use them. I had a desperate time the last afternoon before a bank hol weekend trying to get her new tablets before she went into care.

[EdithWales in reply to scats]

No Changing the colour of the packets confused me 🥂🥂

[DorsetLady PMRGCAuk volunteer in reply to scats]

Nope! Not in the least. 🤦🏻‍♀️

[Daisychain12 in reply to scats]

It’s a conspiracy!!! Fake news!!! Grrrrrrr!!!!

[Hellyowl]

Have a great holiday, I have never taken too little but several times taken 5's instead of 1's and gone a bit manic in the afternoons. Weird little pills.

[EdithWales in reply to Hellyowl]

Yes and I really don’t think the Pred head helps

Take care

🥂🥂

[piglette in reply to Hellyowl]

I saw a pill box the other day which tells you on the top the last time you opened it!

[EdithWales in reply to Hellyowl]

I have to have it 🥂🥂

[kay7954]

I messed up my prednisone too and I decided to mark on the top; P5 for 5mg and P10 for 10mg, P20 for 20mg and so on. I used a black permanent marker and have had no mess ups since. Have a wonderful time on the cruise. I do want to say that this time of year is stressful anyways, but having GCA/PMR this year has made it so much worse. I started having a flare just before Thanksgiving and had to go back to 20mg from 10mg. We need to protect ourselves from stress if at all possible.

[simfonia55]

Hi. I sympathise, hell of a pain, hope you can stay on 10 mg, for 2 weeks, and come down by a half tablet for another 2 wks, then depending how you feel try a drop of 1mg, until you come to your usual level. It really is trial,and error,

doctors do not seem to Know, what to advise, and we all should be monitored on a monthly basis. enjoy your cruise. simfonia 55