On 45mg Prednisolone. Doc just told me to miss a day.

[Blondgrassblowing]

I'm so frightened. I have got totally confused. Confusion started when I got diagnosed with GCA and put on Prednisolone 50 mg, along with Apixaban, Lanzoprazole, coleocalciferol, something that's vit D complex plus calcium (forgotton the name), simavastin and Bisoprolol. Then I had afall, got taken to hospital where various tests were done, one of which showed multiple nodules on lungs, plus my troponin levels were up (shows heart under stress), but inflammatory markers down. Sorry, can't be specific as this lst week confusion levels have soared, can't remember what day it is and forget to do things or do things twice. I can't remember which meds I've taken or when I've taken them which is scary because of the danger of overdosing or missing something crucial (Like Prednisolone). In hospital I was put on Amoxycillin because they thought I might have an infection. This made everything far worse.

The only reason I've got some "facts" on here is because I've just got a letter from the lung clinic (re lung nodules) so there are some dates written down and in front of me.

Anyway this morning, I couln't remember if I'd taken my Pred, nor the Amoxycillin, nor the apixaban. And if I had taken them, I hadn't a clue at what time. Could have been anywhere between about 4.00 am and 09.40. So I phoned the Doc.

His initial advice was to just continue taking everything as before and take the next amoxycillin dose when it was due. Then I asked specifically about what exactly I should eat today regarding pred and apixaban, all the other meds etc. I think said wait a few hours and then take a dose of Pred, and the Apixaban the same, but I put the phone down to write it down and found I'd just completely forgotton what he'd said. So I had to phone back. This time he said don't take any pred today. Start again tomorrow. But that means that if I didn't take my pred, I'll have totally missed a day, on 45mg. Scary. But if I did take it, it 's OK. I'm terrified.

Oh, and I got taken into hospital again four days ago (ish) after my GCA seemed to be building up, and my heart had gone into hyperdrive. NO concession to suppressed immunity, put on general ward, nurses wafting in and out without face masks, doors left open to corridor, members of public in and out at visiting times etc when I protested they said I was being silly, they treated immuno surptressed people all the time, and they didn't need to be self in isolation. They also lost all the medicines I took in, so now I haven't got enough Pred to get me through 'till Monday. Doc is arranging a new supply in blister packs to arrive this afternoon.

I've lost all hope. Nothing I do to help myself seems to go right. Seems no point doing anything anymore. Need a bit of a morale boost I think!

[PMRpro Ambassador]

Stop panicking - lie back and take several slow deep breaths!

Missing a single dose is fine, don't worry about it. It is better not to with GCA but just once

Get someone to help you and speak to the pharmacist, explain the problem and ask if they can put all your medications into blister packs with dose times so that you can see what you have already taken today. If they can't do it in blister packs quickly, buy a set of daily dosette boxes and get them to fill them for you and label each day clearly. Don't rely on just sorting the dose out at the time yourself.

However, if you are this confused and your memory is that poor and getting you into a right pickle, you need someone to help you with more than that. It can be an effect of high dose pred and also of infections. And what is called polypharmacy (lots of different medications) just adds to it.

Have you any family living with you? Or nearby? Or a friend who is really with it? You need practical help from someone who can think for you until you settle down again.

[Blondgrassblowing in reply to PMRpro]

Thanks for that reply, I'm glad to say the GP has come up trumps and is arranging all my meds to be delivered today or early tomorrow in blister packs. Unfortunately only family is sister in S.Wales. Do have really concerned friends, but given my recent hospital experience, I'm worried about developing Covid and passing it on. So want to spend at least 10 days in total isolation. Just going to hope the blister packs help. I must admit it was terryfying me, with being on such high dose pred, that missing a day was going to have awful repercussions (although of course if I didn't take it this morning and then miss tomorrow, it'll be two days missed.) I've never been this confused before. Hate it. However I have sat down to relax, and have just eaten a banana sandwich in order to have something in my stomach to guard against inflamation. OK I know I shouldn't have (blood sugaretc etc etc), but I just needed to cheer myself up a bit! It's working, and so's your message. Thanks

[PMRpro Ambassador in reply to Blondgrassblowing]

You ARE slightly immunosuppressed but it isn't as dramatic as if you were a cancer patient or post-organ transplant. Covid is much less of a problem than it was as long as you have had the vaccinations so I think total isolation is not that necessary - it is being in big crowds that is possibly the thing to avoid. Though to be fair, I have to admit, you never know, being in contact with one person with Covid is enough ...

[DorsetLady PMRGCAuk volunteer in reply to Blondgrassblowing]

Good re pharmacy/meds. Hopefully that will continue certainly whilst you are high dose Pred - which can cause enough problems on their own with the added ones.

Once your confusion has abated and if/when pharmacy stops delivering meds, then get yourself a dosette box - either from pharmacy or online - and on a quiet day sort your meds out. Also as they are different times, also set up alarms/reminders on your iPhone..

Things will get better…

[Koalajane]

can you not have your friends come and all wear masks if they are agreeable. That would surely reassure you

[Blondgrassblowing in reply to Koalajane]

Hi Koalajane. Would like to say it would reassure me, but I'm aware that wearing a mask doesn't really protect the wearer from getting infected, it's more so that the person wearing the mask doesn't spread around any germs they might have. I'd have to get myself some really serious PP, like an FFP respirator type mask, which protects against inhaling fine droplets of Covid. Maybe some would consider it a bit over the top but it's the only way I'd feel safe. Also, if I did develop Covid and my friends got it, I'd feel awful. So it looks like self isolation for the mo.

[PMRpro Ambassador in reply to Blondgrassblowing]

Both uses of the mask is effective. In Italy we used FFP2 masks as standard - reduce the amount of virus let through by over 90%. Obviously both persons using it is best but reducing what gets to you by 90% is pretty helpful.

[artfingers in reply to Blondgrassblowing]

A really good, well fitting, medical grade N95 mask will be very effective against Covid, colds, etc. A surgical mask not so much.

[Hidden]

Its very good of you to worry about passing on or picking up Covid but ,at the moment, its much more important that someone looks in on you at least once a day till your confusion settles down. Even if they just hover at your front door both wearing a mask. Just to check that you are eating and all seems safe.🌷🌷

[Sophiestree]

Nothing to add, but perhaps have a notebook or diary by your meds and every time you take anything jot it down with the date and time.

also make a note of how you are feeling. High doses of steroids can make you feel all over the place. I remember saying it was like feeling I was standing on a power plate with constant shaking.

I know you are really concerned re catching anything but at the same time you need support.

Have you looked into something like Mindfulness. I don't get on with some voices, but do find it helpful, plus breathing techniques, I do those often and rate them. If you google them you'll find plenty.

[Gimme]

It sounds like typical pred head to me. Your head will start to clear as the dose slowly comes down. I would hazard a guess that a lot of your anxiety about doing things right/wrong also comes from the prednisolone. It does that to me too, at a much lower dose. I think some of us are much more sensitive to it than others and you are still on quite a high dose. It sounds like you need to cut yourself a little bit of slack and be kind to yourself. You have an awful lot going on there, so its not surprising that it feels chaotic. It sounds like you already have the issue with the dosing sorted out. I can't deal with more than one thing at once, since I have been on pred and I still forget what I am doing half way though it. My concentration is terrible. I write endless lists and tick things off when I have done them. I have post-its dotted around the place. I carry a small notebook in my bag and I write things down as they are said to me. I also make sure that I have paper and pen when I am on the phone. Don't be embarrassed to ask people to slow down or repeat things if you feel confused. It's the meds, it's not you, so don't give yourself a hard time over it. In your shoes, first off, I would look at your list of things that are bothering you and one at a time, think what would make it easier on yourself. Don't be afraid to ask for help with those things, if you need it. It sounds like you have some good friends. Then make sure you spend some time of every day just doing something that you find calming; listening to your favourite relaxing music, sitting in the garden, some stitching or knitting if you like that, a stroll round the park, watching nature videos, whatever it takes. I hope you start to feel better soon. 💗

[Pusph]

Poor you - what an awful time you're having! A lot of the blister packs don't have the day of the week printed on them so I always write on the front of the main box the day of the week (and maybe even the actual date) that I started it so that I can count back if necessary! I really hope that things improve for you and quickly.xx

[Pixix]

buy some FFP2 masks. You can buy online and get delivered. Higher protection and will give you peace of mind too. We are shielding after my husband was in hospital with pneumonia twice recently and is still recovering. We wear masks everywhere and get everything possible online. I booked our gas boiler service yesterday and asked plumber if he would wear a mask in our house and he said of course he will. Your friends will understand, I think you need people around you and not isolation at this time.

[Andos16]

Everyone has said everything that I would suggest but best wishes.

[Tiggy70]

So sorry to hear you’re having such a rough time. Things will settle down. I’m on 9 prescription meds and insulin daily and know how easy it is to get confused with taking the tablets. I use a weekly dosette box (from Amazon) by a company called Auvon. I have 4 weekly boxes (7 days in each one) and make up a months supply in advance. I use a sharpie pen and put the date on each daily box and my pred dose. This system has been working well for me. Each daily box can be removed and put in your handbag if you are going out. I’ll try and add a picture but I haven’t done this before so I hope it works. All the best 🌸

Dosette boxes

[Broseley in reply to Tiggy70]

That looks really useful. Speaking as someone who is also on a lot of meds (thankfully not all prescribed at once like Blondgrassblowing ) I have to take some meds, e.g. omeprazole, before food and some e.g. pred after food. I'm not sure how the boxes would help with this?

I manage by keeping the pre breakfast and bedtime meds in the bathroom and the rest downstairs.

[PMRpro Ambassador in reply to Broseley]

Some have multiple sections for morning, midday, afternoon, evening doses but obviously you can adapt that for your particular timings. I had medications 5x daily but was sufficiently with it to manage evening dinnertime-ish and evening going to bed in one compartment or associated with loading it for next day. And I set alarms on my phone, trying to keep the phone and dosette box together. I (rarely) managed to switch the alarm off and forgot the tablets but not often enough to kill me!!!

[Broseley in reply to PMRpro]

I have a reminder for my pred, trouble is, if I don't hear the short ping, I still miss it though usually remember when I look at my phone. I have also connected my phone calendar to my Amazon Echo so Alexa reminds me of that, my physio and any other calendar entries - if I'm at home to hear them!

[PMRpro Ambassador in reply to Broseley]

I use an alarm setting on my ancient "burner" phone - rings until stopped and then at 10 min intervals. I don't think the reminder on the iphone would be as good.

[Broseley in reply to PMRpro]

That's a good idea. I have an old phone I could use for that.

[Tiggy70 in reply to Broseley]

Hi, I think we have to each do what works best for us. It sounds like you have your pre breakfast and bedtime meds sorted. As Pro does I have my post evening meal and bedtime meds in the evening section of the dosette box. I wear a Fitbit and have 6 alarms set to remind me when to take stuff. The alarms also vibrate on my wrist which is useful if I’m in a noisy environment. I also have to take Insulin twice a day half an hour before breakfast and my evening meal. The breakfast one I do when I wake up and rely on Alexa, Fitbit and my husband to remind me of the evening dose.

[Broseley in reply to Tiggy70]

Thanks, I have a fitbit but I've learnt to ignore the vibrations!

[Fatsiajaponica]

Hello there, just seen your post and sending best wishes hoping that you feel a little better today. Nothing to add to all the helpful and caring comments already made except to agree that high doses of pred make you a bit bonkers! I was on 60 (eye emergency) now down to 30mgs and still feeling very strange and forgetting basic things, so you are definitely not alone in that. I set up a system on a chalk board but still forget what to take when but nothing awful seems to happen so I have become less stressed about it all. Take care and keep us updated as we will be thinking of you.