Four days in...

Four days in to my seven days on 12 mg and I feel better than I've felt in many weeks. I still have niggles but they seem to be receding a bit further every day, and if I may borrow an expression from a poster on one of the other threads - I was leaping around in the garden yesterday like a gazelle! Well, not exactly but I managed to do a couple of small jobs with no consequences.

Today I managed a short cycle on my bike down to the beach - the first in several weeks.

Three days to go till I drop down to 10mg for a further seven days and I'm cautiously optimistic.

I will update.

Thanks to everyone who advised on the previous thread.

[Sophiestree]

Good to hear you are doing well but the next drop sounds quite a big one after only 7 days on 12mg. Don't be in too much of a rush, be kind to yourself.

[Hidden in reply to Sophiestree]

The move from 8mg up to 12 mg was an emergency measure only and the choice I had was to stay on it for a further week or to drop down to 10mg for a week to see how it goes before dropping back to 8.5mg and starting the taper again from there. The full story is on my previous thread along with all the suggestions from others on how to proceed and I chose to follow DL's advice due to limitations on my pred supply. Link given below.

It's definitely working so far although my legs were a bit stiff when I got up today, but we had a very hard frost in the night and sleep with the window open (habit of a lifetime) so maybe that's a factor in the stiffness...🤔

Needless to say we don't have the central heating on a lot now either so the house can get a bit chilly..

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I always have window open at night (just a little) -as you say habit of lifetime -and wake with a stuffy head if I don’t.

I know we are all having to think about heating costs, but please make sure you are keeping warm enough- that can have a detrimental effect on your health.

[Hidden in reply to DorsetLady]

Ha, yes! If it's stormy outside or there is noise I have to shut the window and it drives me mad - just about suffocates me.

I do have two log burners in the house which are both in action usually from October-April so it's not exactly a fridge in here, but in my own little playroom which is off the main passage there is no heating on and it can get a bit chill. If the weather gets too cold I will reluctantly switch the heating on. ☹️

Actually I was just about to message you. I noticed on a previous thread you mentioned a tapering spreadsheet and I've been looking around the site but can't find it. Do you have a link?

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

yes, but you need to send me your email address -on message - not open forum if you want excel s/sheet -here’s link - healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thank you. I'll message you now..🙂

[Sophiestree in reply to Hidden]

Apologies, I didn't look back at your previous post. But reading your response to DL re not having much pred left, can you ask your GP for more or are they rationing you? I know some do. I always make sure I stock up just in case they put the brakes on.

Re the cold playroom, I have bought some heated blankets and they are just a dream. You can get cheaper ones from Robert Dyas online which seem just as good to me as the ones twice the price. I can find the link if you would like. I also have smaller heated pads which I just put on my back and they are good too. I have one of those in my bedroom for,the morning.

I rarely have heat on upstairs anyway as hate hot bedrooms, but the back pad on a frosty morning when I'm drinking tea in bed is fab.

[Hidden in reply to Sophiestree]

Hiya,

My GP is reluctant for me to stay on pred and wants me off it asap but so far hasn't rationed me. I've yet to tell her of my latest increase as last time we spoke a couple of months ago she advised me to drop to 5mg and that's where she thinks I'm at now so I'm expecting some fireworks when we next speak. Not looking forward to that.

Luckily for me I've always been one of those people who would prefer to be a little bit cold than a little bit too warm so it's not bothering me too much at the moment but I'm thinking it might as the winter progresses. If it becomes a problem then I'll start looking at options. I might buy a nice blanket as a precaution...

[PMRpro Ambassador in reply to Hidden]

"My GP is reluctant for me to stay on pred "

And what is she offering as an alternative? If they diagnose PMR or GCA - the patient needs pred. If you don't want them on pred, don't diagnose PMR ... And if the patient IS on pred - they need enough or there is no point. It is downright cruel to treat an imaginary patient and not the one in front of them.

[Hidden in reply to PMRpro]

It's quite infuriating to say the least. I can't understand why so many of them seem to be stuck on this. I've been reading through a lot of the posts on here and seen some horror stories about GPs and rheumatologists apparently wanting to force people off pred and can't understand it. We all know the risks and are prepared to accept them for a better quality of life in PMR terms at least, so what's the problem? I don't get it.

[PMRpro Ambassador in reply to Hidden]

No, me neither, They should have to live with it ...

[Bcol]

Good to hear things are back under control, but I wouldn't have the 10mg for seven days in tablets of stone, see how you feel at the end of that week and only if things feel good start the next taper downwards.

[Hidden in reply to Bcol]

Thanks.

Indeed it wont be set in stone and I'll only drop back after the seven days on 10mg if I feel strong enough.

[SheffieldJane]

Excited for you - go carefully. 🌈

[Hidden in reply to SheffieldJane]

Thank you. I will. 😊