A cautionary tale !

[Tiggy70]

A cautionary note to all Prednisolone users !

Last Christmas whilst away in the US I mixed up my doses of 5mg and 1 mg Pred. I’m currently on 8 prescription medications so I have weekly dosette boxes which I make up in advance to save time and avoid confusion - or so I thought! My Pred comes in blister packs of 1 mg and 5 mg. For the 5 mg I use a sharpie pen and write a 5 on each tablet in the pack then cut them up individually and put them in the dosette boxes.. The 1’s I take out of the blister pack and put them in the boxes uncovered. This has worked well for me for the past 2+ years until last Christmas. I’m not sure how it happened but I managed to mark up some of my 1mg tablets as 5’s. I didn’t notice as I had taken an extra weeks supply of everything in case of delays etc. To make matters worse I was dealing with a flare and should have been taking extra not less. My mistake meant that I was taking 2mg Pred instead of 10mg a reduction of 80%!

I was very unwell whilst away (no surprises there!) but put it down to the long journey, dealing with a flare and possibly picking up a virus en route. It spoilt my holiday with my grandchildren as I could hardly move out of the chair, had no appetite and a constant headache which I thought might be the start of GCA. I didn’t discover my mistake until last Friday so I’ve been under dosing for well over 2 weeks.

As I was very worried I’ve spoken to my gp and Rheumatology helpline both of whom say I shouldn’t have any long term problems. I’m extremely tired, have lost weight as I have a reduced appetite and my sleep pattern has gone haywire. In future I’m only preparing my other drugs in advance and keeping the Prednisolone in their boxes! 🌺🌺

[SnazzyD]

Eeps! Shows you need it though and it’s not a figment of your imagination that you need what you think you need. I had a similar (ish) situation at the beginning of GCA when I wasn’t aware that my newly enteric coated Pred wasn’t being absorbed properly due to lots of fatty food on holiday. My symptoms started to come back and I felt very unwell. Somehow I put 2 and 2 together, rectified the issue and I got better. Made me realise the Pred was there for a reason that did actually exist!

[Tiggy70 in reply to SnazzyD]

Hi SnazzyD, I’m prescribed plain pred. All the tablets are white and there is very little difference in size or shape. Sometimes when I pick them up from the pharmacy the box has ‘mixed batch’ written on the side as they have given me pills made by different manufacturers. It’s a pity plain pred can’t be manufactured in different colours for different strengths but I guess it all comes down to costs and profits.

[PMRpro Ambassador in reply to Tiggy70]

And it would introduce another factor in the side effect profile - colouring can cause problems too.

[cycli]

Did the same the other day. Not for 2 weeks but at least 3 days. Should be on 25mg and actually took 5mg instead. Didn't help and still recovering as back to 25mg. Not funny is it.

[Tiggy70 in reply to cycli]

No it’s not. The Rheumatology nurse I spoke to said you’re not the first and you won’t be the last!

[PMRpro Ambassador]

Your unwellness was probably mostly due to you skating on the threshold of an adrenal crisis - you were lucky! Weight loss is also seen there.

As long as you haven't flared badly there won't be a longterm problem now you are back to normal doses!

[Tiggy70 in reply to PMRpro]

Thanks. I do consider myself very lucky. It could have been much worse! I’m taking things easy at the moment. My appetite has improved a bit today and I haven’t been quite so exhausted. My sleep pattern is all over the place but I’m hoping that will settle down soon.

[Merryfield]

Sounds like a good plan to keep pred separate since dosage can go up and down depending on symptoms. I keep mine separate too.

[Tiggy70 in reply to Merryfield]

yes, thanks I’m going to keep them separate now🌸

[Heron82]

I am so sorry you had this experience but you are not alone. Has deterred me from going on holiday. However you can get colour coated gastric resistant table. The 5 mg are red, 2.5mg are dark blue/black, and the 1 mg are yellow. This makes taking the correct dose a lot easier and also will help protect you stomach.

[DorsetLady PMRGCAuk volunteer in reply to Heron82]

Unfortunately not all doctors are very happy about prescribing GR Pred…

[Heron82 in reply to DorsetLady]

Why ever not? Budgets or other? Thanks

[DorsetLady PMRGCAuk volunteer in reply to Heron82]

Budgets usually -GR are often more expensive than plain (not always, depends on dosage) ) - but we have this conversation very often and GF versus plain plus a PPI amounts to very little difference in cost.

But the view that GR are much more costly still seems to exist in some places.

[Tiggy70 in reply to Heron82]

Please don’t be put off from going on holiday. Our holidays are really important for our health and well-being. I just need to be more mindful in future when preparing my pills. It’s been quite a wake up call for me as I’ve always been a person who dots the i’s and crosses the t’s ! I still can’t believe I did it! 🌸

[PMRpro Ambassador in reply to Tiggy70]

I have to say I did hate the long haul trips for meetings as I had to pack! Our real holidays were so much easier - normal every day stuff simply transferred from flat to the campervan which had all its own equipment.

[Tiggy70 in reply to PMRpro]

When my children were young we were fortunate to have two 2 week holidays in the long summer break. One was a Thomson‘s ‘Children Go Free’ package holiday in Spain or Majorca and the other a two week camping holiday in Cornwall with friends. Both my kids now in their mid forties often say how they much preferred the camping holidays. I’m not sure I did as because I was only working part time it was my job to get everything ready, load up the car, get up at dawn to travel to Cornwall then erect a 6 berth tent. My husband did all the driving thankfully. I did love the holidays and being out in the open air but it was hard work!

[PMRpro Ambassador in reply to Tiggy70]

That is the joy of a campervan!!!! Though I have done all levels of camping. Except glamping ...

[Tiggy70 in reply to PMRpro]

I haven’t been persuaded to try glamping yet. These days I prefer a nice comfy bed, my own washing and toilet facilities and a nice breakfast cooked by someone else. I think there are glamping sites that provide all the luxuries but they are quite expensive.

[PMRpro Ambassador in reply to Tiggy70]

I don't "do" breakfast - resent paying for something I'd rather not have ... When we sold the camper it was with the thought a mobile home option was a fair compromise. But I need someone to come with me or it is so expensive.

[Tiggy70 in reply to PMRpro]

I’m sure there are others who would come on board with you. Probably not your daughters. We find that these days our kids expect the bank of mum and dad to cough up. They do offer but they know that we usually say it’s ok🥴

[Bcol in reply to PMRpro]

Did glamping a few years ago for a friend's wedding, the "glamp" " hut" ,whatever it is called, was fine, the downside was a tramp across dewy fields to the toilet and facilities, not fun in the night!!!

[PMRpro Ambassador in reply to Bcol]

Which to me says it wasn't glamping! My camping days in vans included en-suites ...

[Bcol in reply to PMRpro]

If only!! At least the wedding was good. Mind you they separated six months later!!!!

[PMRpro Ambassador in reply to Bcol]

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Oops…

[Bcol in reply to DorsetLady]

Sad to say she was used, but that's not a story for publication.

[Broseley]

As I take different medications 5 times during the day, I have to be very careful to stick to my daily routine. My AA day throws me out if I'm not very careful, so being on holiday is a minefield. I have reminders on my phone but I've got so used to them I often ignore them. I linked my phone calendar to my Smart speaker which helps a bit. Obviously no use on holiday though, or if you're out.TBH I don't think I would mix up my pred though because the 1mg tablets are smaller than the 5mg so as long as I am taking at least one of each I'm OK. When I get to 5mg I'll put the 1mg tablets away in the cupboard. Thanks for the heads up on this, glad you're OK! So sorry it spoilt your holiday though.

[Tiggy70]

I also have alarms on my Fitbit when my pills are due but mostly they are timed to coincide with breakfast, lunch and dinner. I take my steroids as soon as I’ve had my bowl of porridge at breakfast. There is a slight difference in size between the 5s and 1s but that varies a lot between manufacturer. I’ll be much more careful in future - once bitten ….🌸

[Lupusrelative]

always a good idea to keep any medications in their original boxes, canisters etc when traveling. Never know what customs will do with them if they’re not sure what they are or they have been prescribed for you and not someone else.

Hope your body returns to ‘normal’ soon.

[Tiggy70 in reply to Lupusrelative]

Thank you, I’ve felt a bit better over the past couple of days. I usually do as you’ve suggested but because I now have so many boxes (8 medications) I flatten the boxes and put an elastic band around them and put everything into a zip lock bag. I leave all the tablets in their blister packs and I have a copy of my latest prescription and a copy of a letter from my Rheumatologist. If I don’t reduce it all down I can’t get it all in my Rucksack along, with ear phones, iPad, phone, chargers, hand gel, book, magazine, reading glasses, sunglasses, snacks, hair brush, hand wipes, etc, etc . My husband always says to me when we are about to set off on a long haul trip ‘whatever have you got in your rucksack? 🤣’.