Is this the end...

[KCRoyals]

...or another false dawn. Driving to Bremerhaven a few weeks ago I realised I hadn't packed my Pred. Been on 2mg for a couple of years. Okay thought if things start to go wonky I'll go to the local medical centre and tell them. Been 3 weeks now and still haven't had any problems or aches. Now I know PMR has a mind of its own but wondering if there is a possibility it may have cleared or hibernating ready to give me a nasty shock. Will be having my annual medical in a couple of months so should I leave it till then and get the CPR/ESR blood test. Be nice after 17 years to know it may have gone, but I ain't holding my breath. For the time being will play it by ear.

[DorsetLady PMRGCAuk volunteer]

Hope it is the end...😊 as you say play by ear... and I'd include the blood tests along with others prior to annual MOT..

[PMRpro Ambassador]

And do watch out for any signs of adrenal insufficiency. Perfectly possible you will be fine - but care is needed for up to a year after stopping pred altogether.

I managed to forget my pred when nipping back to England from Scotland for 3 days for a funeral. Never done it before!! Usually I stop after anything from 200m to 10km after I set off to check but hadn't ... Didn't have too much concern about the PMR as I am also on Actemra but was a bit itchy about the adrenal side of things given I am on 7mg pred!! The pharmacist in Boots agreed and happily handed over a week's worth - and since it was Boots charged me for the privilege!

[Longtimer in reply to PMRpro]

That’s Boots for you! Love “nipping” back to England, wish you would stop showing off! ….The weather here in Norfolk has now cooled a bit, been 30 degrees! so different to Scotland.

[PMRpro Ambassador in reply to Longtimer]

Frigging perishing here! Chucking it down today - yesterday was lovely, tomorrow may be lovely. But you have no idea in advance. But sweltering - nah ...

[Longtimer in reply to PMRpro]

I never believe the forecasts anyway, but we’ll see, blink and it can change.

[PMRpro Ambassador in reply to Longtimer]

If only - isn't changing with a night's sleep never mind a blink ...

[KCRoyals in reply to PMRpro]

Can Boots issue Pred? Never knew that, hope they didn't charge more than 2p pill.

[PMRpro Ambassador in reply to KCRoyals]

£8.25 for 7 days at 7mg. Any pharmacy will issue an emergency supply if it is deemed you are at risk by suddenly stopping your daily pred dose.

[Missus835 in reply to PMRpro]

Just this week my pharmacy would not. I was supposed to go on a mini vacay last Monday. My GP was away and I was about to run out of Pred. Had to postpone the trip til I could see her and then that was a s**t show. Leave for Prince Edward Island this Sunday. I had just enough 1 mg Pred to last the week and didn't want to chance being away and run out. Same with my clonazepam. They permit me exactly one .5 mg per day even though it helps my back immensely. It's a controlled drug here in Canada. Same with T3. I was allowed to pick up all the Rx's just this morning. A day earlier because the pharm is closed the weekends. Very stressful.

[PMRpro Ambassador in reply to Missus835]

You might have done better at PEI rather than your home pharmacy. But your set-up sounds a bit inflexible.

[Missus835 in reply to PMRpro]

They were not always so rigid. A day or two early was never a huge issue. Now they make one feel like a raging junkie. LOL. Do they think we really want to need these? At least glad I don't have to worry about pills while away.

[Dragonflys in reply to Missus835]

I know how you feel…lately they have become very rigid in my prednisone prescriptions. If I up my dose and run out sooner I get the third degree. I have to argue with them or call my doctor. Its become very controlled. I dont know why. But I unfortunately still need to stay on it yet not that I want to but its allowing me to walk and function.

Someone mentioned dial 111 well that isnt in Canada. Thats UK.

Take care Im a fellow Canadian and share your frustration !

[Missus835 in reply to Dragonflys]

I feel you. It was very stressful. Thanks!

[Northernarcher in reply to PMRpro]

If you ring 111 and request an emergency prescription they will do it straight away for you have used this a couple of times works!

[ChrisBeeLoop in reply to Northernarcher]

That is really worth knowing. Thank you!

[PMRpro Ambassador in reply to Northernarcher]

Oh, that IS handy to know. I remember a PMR friend living in France who forgot her pred on a trip to the UK and she quite happily just risked a flare for over a week, being unaware of the risks of stopping a longterm moderate dose of pred suddenly - I think she was on about 7mg. She was lucky - she was fine. But ...

[Louisepenygraig in reply to Northernarcher]

I was just going to say this. I went to a friend's wedding in England (from Wales) a couple of weeks ago and, much to my horror I forgot my meds, in spite of having ticked them of my packing list. I rang 111 which directed me to their website and the whole process was very simple. I didn't have to speak to anyone. They referred me to a local pharmacy who rang me back very quickly to find out what I needed. A quick visit to them and I got everything I needed for three days, apart from pregabalin which I was OK without. Luckily I keep a copy of my repeat prescription in my handbag which helped. I don't know if NHS England can access records from NHS Wales. I was impressed with how simple the process was. I doubt I'll forget them again but now I carry a blister pack of 5s in my bag just in case.

[Numptybrain in reply to PMRpro]

That’s good to know , I didn’t know you could get emergency prescriptions like that.

Take care

Wendy xx

[PMRpro Ambassador in reply to Numptybrain]

I knew a pharmacist could do it - I wasn't aware of the 111 option though and that sounds something well worth knowing about.

[Numptybrain in reply to PMRpro]

Definitely, thanks for raising this.

Wendy xx

[Charlie1boy]

I made one of my reductions well before I had intended as a result of forgetting to take my pred. I think I was round about the three mg level.

By the time I remembered the following day, I realised I had no pain symptoms at all, so carried on at a lower level.

[Grammy80]

Sounds promising~~a day at a time sounds wise. You'll know if you need 'a little help from your friends.' You'll know what is best. Be well...💞

[powerwalk]

That would be good to be able to stay off it. Just wondering if you ever had an adrenal test before all this?

[Bedwell]

sounds incredible .well done!!!

I’ve been quite upset because had an app with a recommended physio because of throbbing hand… she was adamant I shouldn’t reduce steroids… writing to gp … said I should do what gp says.. I said gp had nothing to do with steroids! Except to continue predisolone. I’ve stuck to my intention .. have been very very slow. She said steroids there to relieve pain.. but since the original magic so I could suddenly lift my arms above my head..I haven’t found pred has helped pain here and there.. after all I am 86! She has given me helpful exercises for some lower back ache.. It’s been quite unsettling.

[Missus835 in reply to Bedwell]

I'm having probs with my GP and Pred. She doesn't like DLs 5 week taper (even though it works for me). I had to explain it and the possibility of adrenal issues down the road. She didn't want to take responsibility for repeating my Rx; said that was up to the rheumy who I haven't heard from since April 9. Anyway she relented and is policing me again with once a month Rx and 1 mg tabs. Her taper plan is 1 mg per month which essentially is DLs taper, but she doesn't get it. Once again I'm getting the "follow my plan or no more Pred". Made me feel like an errant child, so I cried like one. Onward and downward!

[Bedwell in reply to Missus835]

🫠😏😁😘

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Good job she is too far away for me to come round and say - there’s nothing wrong with my taper, thank you very much! 🤣😂

[Missus835 in reply to DorsetLady]

😜😂 It's ridiculous. I also asked her about Ezitimibe for my cholesterol as Rosu and Ator mess my stomach and brain up. She wanted to know where I heard of it. Actually it was thru someone in our tribe, but I said "on the internet". So she ended up cutting the Atorvastatin to 5 mg. Still messes me up. Urrggg!

[PMRpro Ambassador in reply to Missus835]

Silly woman - all patients have plenty of educative info available to them. You don't have to be totally ignorant any more!

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Just say - “ the charity” in future… but she does seem a bit adverse to anyone else’s opinion.

[Missus835 in reply to DorsetLady]

I couldn't think of "the charity". LOL. She wasn't adverse until the ruddy rheumy got involved back in March. She sent my GP an email about the Pred and it must have been very intimidating. I told her that the rheumy is no longer in the picture as I hadn't heard from her since April 9th and I'd rather keep it that way. I said the rheumy's ego precedes her. Anyway Pred issue somewhat resolved and we're now at 9 mg thanks to your taper. That's the lowest I've been since Jan. 2022. Thanks DL.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Good…

[KCRoyals in reply to DorsetLady]

D L, the Queen of the Taper.🙃

[DorsetLady PMRGCAuk volunteer in reply to KCRoyals]

Others are available 😊… and designed by patients - that’s probably what she doesn’t like… how could we possibly know…

[PMRpro Ambassador in reply to DorsetLady]

And tested by PMR experts like Prof Sarah Mackie ...

[KCRoyals]

Always something interesting and informative on here. Never a dull moment.

[DrRon]

without reading anyone else's counsel or congrats to you, I gladly hope with you that after 17 yrs you have ended this nightmare condition.

[KCRoyals in reply to DrRon]

It's a day by day thing. If it comes back then I will have to live with that. PMR has its own set of rules.

[KCRoyals in reply to KCRoyals]

Okay, it did come back, gradually. After 3 weeks slight pain where it originated from in shoulder. Then one joint after another followed suit. Going back to 5mg and will taper back to 2 on a weekly basis. Guess I'm going to be on these until Satans little helpers come and take me away. By the way, never had any problems with Prednisone so hopefully I'll get the status quo back. ( Don't mean that awful 70's group ).

[DorsetLady PMRGCAuk volunteer in reply to KCRoyals]

Sorry to tell you SQ are still about! 🤣😂

[KCRoyals in reply to DorsetLady]

Hope not.😇

[artfingers]

I'm lucky I guess. My rheumatologist still prescribes my old higher dose of pred at my request even as I have tapered down so that now I have some I can save/set aside in case I need to suddenly up the dose. Nice to have that cushion!