Next step of reduction,DLs slow taper.

[Angelsmummy]

Morning everybody and hope the bank holiday is finding everybody well?This is mainly for DL and PMRpro.About 11 weeks ago,I asked for advice regarding pains in head and neck and was advised to up pred for a while in case if was a flare.Diagnosed with GCA with left sight loss in Dec 22.Anyway,have completed the 8 to 7 mg,and now in the fifth week of 7 to 6.Rheumy is phoning me in a few days regarding my taper and I know he is going to say,drop another milligram over a month( I have not told him of my brief increase nor the 5 week plan!) Am I right in thinking that once I reach 5 mg I should be dropping by increments of 1/2 a milligram over 5 weeks as per DLs plan?I need to tell him what I want,not go with the hurried regime they seem to expect?Felt quite good but fatigue days a little more frequent over the last 2 weeks but guessing it is body /adrenals adjusting??Regarding the pains I was getting which made me contact the forum,I think I might have the answer!About four months ago,I turned over in bed ,heard a loud click,very ,very painful which warranted getting up and taking paracetamol and a lot of massage and by next morning,pain gone.Over the last few weeks,have noticed a lump on my right shoulder,quite “ sticky out” Hurts to lay down .Done a bit of detective work ,termed a bony spur,which can make ear,neck ,eye pain,so hopefully this is the problem.Can put up with this discomfort pain if this is the case,though it does make my opposite temple hurt a bit too.Sorry this is long winded but needed to get everything in !Sincere wished to you all,xx😜🌼

[PMRpro Ambassador]

The steps down should be as near to 10% of the current dose as possible - at 5mg that would be 1/2mg and as you get even lower it would be even less. But the slowed tapers also help in that respect. But basically - it is what works for you. Some people manage 1mg with a slowed taper. Some struggle with 1/2mg even with a slowed taper as early as 10mg.

[Angelsmummy in reply to PMRpro]

Thanks PMR pro,shall do the 1/2 mg reduction,best be safe than sorry.Sorry you are having awful weather in Scotland!💨💨💨☂️Warm but a bit of wind in Suffolk,more bearable to sit out in!x🌼

[PMRpro Ambassador in reply to Angelsmummy]

It is utterly disgusting!!!! Barely a glimpse of the sun ...

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

You can always extend any slow taper... and definitely only 0.5mg from now on. If rheumy queries it then say it's going to help with tapering successfully with your GCA - and help the adrenals to be nudged into life again. If they don't understand that rationale, then they don't know much about either 🤦‍♀️

[Angelsmummy in reply to DorsetLady]

Did send you a reply but it has not appeared!😱Reckon it has gone into the clouds somewhere!x🌼

[PMRpro Ambassador in reply to Angelsmummy]

If you leave the page by accident before clicking firmly on Reply - it goes AWOL. It's happened to me once this morning though not on this forum!!

[Angelsmummy in reply to PMRpro]

Thanks for that PMRpro.,Guess that is what happened.Sitting under apple tree in dappled light so must have missed the button!Just basically said that I would start on 5.5 on Sunday,and TELL my sweet little Rheumy man that I am going to do it very slowly,using the words that DL said.And if he brings up the TCZ again,a firm NO.As I was told by somebody very knowledgeable on here😉why introduce it when I am so low on pred?Fingers crossed for my next steps!xx💐💐💐

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

It happens - even to the most experienced on here😠!

iPad/iPhone usually - laptop reminds me I haven't "sent" a reply when I go to close page.

[Angelsmummy in reply to DorsetLady]

That’s good!Thanks for all your input!x💐😜

[Angelsmummy]

Sad seeing as you are on holiday,never mind ,when you go back home you will probably be too hot!Never a happy medium is there with British weather!😱😜

[PMRpro Ambassador in reply to Angelsmummy]

I came now to miss the awful heat in July and August at home but I didn't expect it to be this bad!! Would have been about right if I had stopped in Yorkshire!! And usually it is improving at home - but next weekend is forecast to be over 30C there again!! At least nights are cooler up a mountain!

[Angelsmummy in reply to PMRpro]

WOW could not tolerate that now,gone are the days of sunbathing in the heat of Goa or Kerala,get sweaty when it is about 23 degrees,must be old age and pred!🤣😜Guess the winter woolies will be back in storage again when you go home?Still,at least you will get some decent ice cream,unlike our “Mr Whippy”,though it is tasty!x🍦🍦

[PMRpro Ambassador in reply to Angelsmummy]

Been having good icecream - vegan variety - here, I brought my very venerable icecream maker over as part of a clear out and now my daughter has a house large enough to keep such things! And loads of good Italian icecream makers here in Scotland - bit pricey though!!

I saw in our local online paper this morning that they have clocked up 30 tropical nights this year so far in the lower valleys, that's where the night temperature doesn't fall below 20C . These houses don't have aircon ... It is why we chose to live where I do - up a mountain!

[Angelsmummy in reply to PMRpro]

Must be beautiful,never been to Italy,too late now!Everywhere is SO flat in Suffolk,but beautiful never the less.Surrounded by farmland,and not too far from coast.Regarding ice cream,vegan variety,might just give that a try,good for my lowering cholesterol diet I guess?Been living on baked and stewed apples as we have a veritable mountain of them again this year.Soon be time to put my stall out for surplus of veg and fruit,a few bob for charity.Wrap up well and PLEASE don’t send your artic conditions down here will you?xx😱💨😱☂️💨💐