Part 2 on taper 3/18/22

[Grammy80]

When I signed on I felt absolutely hugged by all...and I appreciate it.

Guess what? When I went to take my evening handful of pills, I noticed there were pills left in the morning slot. There were three white pills that I did not take...10mg of pred and a primidone. Since I have such a keen eye 😎, white pills on white plastic, I didn't see them. One more thing my OH is going to have to check, poor guy. So, I dropped ten milligrams in one day~!!!! No wonder my 'pity pot' feelings came oozing out.

I was feeling down in the late morning 'because I can't do what I used to' and then as I went through the day; it seemed like I could only use my eyes for so long and then sharpness and clarity went out the window. In the afternoon I slept for 5 hours.

There is a peaceful quiet place I go to mentally to retain positivity and acceptance and yesterday I couldn't find it. Well, I found it in my pillbox! I was so excited I wrote my OH a note, he was fast asleep and given my 'nap' I knew he would be up before me.

I know there is always the underlying concerns for all of us that occasionally win in our heads. But, thank heaven for all of you...I'm feeling normal (what is that) today.

Nothing like skipping your prednisone....maybe I should do a Glasgel kiss with the wall?💕💕💕💕💕

[PMRpro Ambassador]

Is there any way to change the background colour of the pill box? Mine is light green and there is also a light blue one - dark enough to show up the stupid little white pills!!!

Had to get the GP to give me 2.5 and 1.25mg bisoprolol tablets - the 2.5s are too small to cut despite having a score line. Even so small they are hard to pick up! OK straight from the blister pack but that isn't practical.

[Grammy80 in reply to PMRpro]

Thanks...I was thinking of painting the bottom of each day with some acrylics...should be fine as it never gets any moisture. I take 17 pills in the am, less of a load at night. I have help filling the box. Think hubby and I have a project tomorrow!💕💕

[Bennijax in reply to PMRpro]

I use a very small red egg cup for moine as white and black preds show up in it - ideally I'd love to design one with a cover, in bright colours and a design that screams TAKE ME!

[PMRpro Ambassador in reply to Bennijax]

There are pill boxes that have an alarm for when they are to be taken - sure one could say Take Me!

[Bennijax in reply to PMRpro]

the other thing I do is create a simple list of the date and the dose, and print that out for the month, keep it next to the preds and the egg cup I use, then check it off by pen when I take the preds. Without that I know I would get confused, it's all too easy for me to confuse myself.

[PMRpro Ambassador in reply to Bennijax]

I have alarms, on the phone next to the pill box. The alarm goes and I still don't manage to take the pill despite switching off the alarm ...

[123-go in reply to Bennijax]

I also have a sheet that I tick off and write next to each day the number of pills I have left. Useful as I’m on a three day cycle for pred.

[SheffieldJane]

I am glad you got to the bottom of your sad space. Thank you for the wisdom. Always welcome. I remember you from your painting pebbles days, way back. We’ve had glorious spring weather in Yorkshire today. So cheering, in spite of world events. 💖💖

[Grammy80 in reply to SheffieldJane]

Makes me smile, Jane....those were fun. Haven't painted in a few months..got to give it a go! Be well....💕💕

[Hidden in reply to Grammy80]

I collected shells and painted them with my grandma and now I’m doing it with my granddaughter..... the circle of life ☺️

[Grammy80 in reply to Hidden]

Memories..my youngest son was married on the Bay of Fundy with an ocean theme and black eyed susans. I made sea shell wreaths and topiaries. Scattered on the tables were shells painted with black-eyed susans for the guests. What a joy!💕 This year they will celebrate 21 years.

[Hidden in reply to Grammy80]

And many more happy years ahead

[Doraflora in reply to SheffieldJane]

Oo, painting pebbles sounds so therapeutic. We’ve got a bucketful of shells our little granddaughter collected on the beach. I’ve been saying for ages that would be a good project to do, painting them.

[Hidden in reply to Doraflora]

Old nail polish is good as long as the entire area is covered in plastic or paper before you start 😀

[123-go in reply to Doraflora]

You can also stick them to small plastic plant pots using a glue gun. Young children could draw a dot on the pot and you could use the glue gun.

[DorsetLady PMRGCAuk volunteer]

Oops….as PMRpro suggests, maybe a coloured pill box - I also have a light blue one- from you know where online!

[Grammy80 in reply to DorsetLady]

You gals are so wise and it is great to join hands with another Amazon Queen....that should be my handle. 💕💕

[Blackcatlover]

You poor dear, I know the feeling. One morning I was vacuuming and I spotted a little white pill on the floor. Gasp! I’m on 4mg so that was a 25 percent decrease. I don’t vac every day so not sure when I missed my mouth. I always hurt because of my osteoarthritis so I just carried on. Made me realize how fragile we can feel with this damn disease when the site of a little white pill can cause your heart to skip a beat. You are such a wonder!❤️

[Grammy80 in reply to Blackcatlover]

Sometimes I wonder how much of a wonder I am ??😵😵, no more of a wonder than you and everyone else on the forum....from whom I draw so much strength~! xo💕

[Hidden in reply to Blackcatlover]

Some times I find my HRT patch stuck to carpet or bottom of slipper when I thought it was on me!

[123-go in reply to Hidden]

Trying not to laugh here!🤭

[Sophiebun11]

I've never understood why when you take Pred for asthma long term you take it every other day so your adrenals keep working on their own, but Rheumys have you take it daily. I like every other day. I'm going to ask again about going to every other day. I did better like that on 60 mg. than low dose daily.

At least you can open the little lid on the daily pill sorter! LOL! I gave up trying to use one.

If it's not one problem it's another. Keep smiling!

Text codes

[PMRpro Ambassador in reply to Sophiebun11]

Someone asked that a few days ago - it isn't recommended for PMR because it rarely controls the symptoms for 2 days and contraindicated for GCA, too risky.

The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person. I used ADT for a while until I developed ?GCA symptoms and the rheumy said I must go back to daily dosing. For PMR it worked reasonably well for me but I struggled to reduce the dose. But then, I do anyway.

[Grammy80 in reply to Sophiebun11]

ATD....that is slowing down for me, thankfully, but appreciate the codes~. There must be something on Amazon that would work for you~!!!💕💕

[SheffieldJane in reply to Sophiebun11]

The whole top of mine slides along to open the compartments containing all my meds and works well.

[123mossie]

I’ve done that several times, found the previous days pills on my fleece pocket. Luckily no harm done, got off lightly. So careless, no excuse!

[Grammy80 in reply to 123mossie]

We, ME, have to be more cautious...and make sure I have my hearing aids in so I can hear it hit the floor! Now I pour them into a small cup to try to get them all, obviously I have to also check the pillbox. We'll all make it...💕 Live and learn.....got to laugh!!

[SheffieldJane in reply to Grammy80]

I get very easily distracted if I try to swallow a dose whilst I am replenishing my pill boxes. I sit there wondering if I took them or not. I double dosed last week and got precisely NO sleep all night. I could have hosted a party. At least I think I did or it was my Adrenals stretching their legs.

[Pippah45 in reply to Grammy80]

I use an egg cup - it's easier not to miss the mouth!

[Doraflora]

Glad you’re on the right track now, Grammy80. Everything is a learning curve for us all.

I’m a tad old-fashioned in that I keep my meds on the worktop (keep in the boxes) & just put the next one in a prominent place each time. I’ve not forgotten one yet🤞

[PMRpro Ambassador in reply to Doraflora]

It's fine until something happens to disrupt the routine. I have a full day's doses set out in the box and it goes into my handbag next to the phone and my passport whenever I leave the house. Just in case. On Monday I had to get the emergency services to visit the ED - I absolutely could not move safely with the current back problem having suddenly got worse after no treatment over the weekend. I forgot to pack the dosette box as it was still by my bed, not on the table waiting for the 9.30am dose alarm. And I didn't get it until mid-afternoon. Didn't matter as much as for some of the tablets - but it was the anti-arrythmic and the atrial fibrillation has been worse this week.

[borednow in reply to PMRpro]

My late father had a wonderful expression "It's just one damn thing after another". He had loads of wonderful expressions which always make me laugh in times of stress!!Feel better soon ...........

[Grammy80 in reply to PMRpro]

Oh, Pro...that won't do. Can you put a chain on the pillbox? So sorry your back is giving you such trouble. Sometimes I think maybe we should carry it in a fanny-pack! Please take it easy and feel better.💕💕

[PMRpro Ambassador in reply to Grammy80]

It is normally glued to my handbag after 9am - never happened before!