Here we go again - def. a flare

[herdysheep]

I was doing so well over last few years, reducing pred very very slowly - down to 3.5 mg but obviously had not noticed pretty slow dripping tap. May even have ignored it thinking the adrenals were playing games. About 6 weeks ago, upped my dose by 5 and thought I had cracked it and returned to 4. (over about 10 days)

It is back with a vengeance so have gone to 10mg. On the basis I upped the dose recently and then gone back down, will the 10-14 days for increasing still be ok or will I have to start to crawling again? It is so dispiriting just when you think you have learnt and been so patient. 😭

[DorsetLady PMRGCAuk volunteer]

Oh flip!

Hope the increase to 10mg will work well -but then I’d be inclined to come down in 2 or even 3 steps, with 5-6 days at each one except for last one -then 3-4 weeks.

Aim for 5mg or maybe 4.5mg to be the last dose -but make sure all okay before introducing your usual taper regime.

[herdysheep in reply to DorsetLady]

Many thanks. Psychologically that feels manageable rather than having to go to square one. early days. Plod on!

[SheffieldJane]

Snakes and Ladders - courage!

[nuigini]

I know how you feel. Been there, done that a few times since 2014. Currently in the same boat. Best of luck getting back on track.

[PMRpro Ambassador]

Ditto to what DL said ... Trouble is - when that happened to me some years ago it was a proper relapse and meant a higher dose. I know - it's being so cheerful wot keeps me going!

[herdysheep in reply to PMRpro]

There's a bit of me prepared for that. Nit holding my breath

[cycli]

sheep dip for nits Herdy. sorry to hear of relapse. Stay strong.

[herdysheep in reply to cycli]

Given my nit typo perhaps I need sheep dog 😅

[cycli in reply to herdysheep]

keep smiling eh?

[Flutterbies57]

I have just read this Herdy and have realised we are in the same paddock. You had just commented on my 'hair' problem 😱and I saw this .

I was down to 3.5 cruising downslowly, no problems. Happy with myself , looking forward to getting my drug free life back (and hair)😂

I had covid, all injections , and two months later all sorts of weird and wonderful health problems arose. I was thinking what now? Dr said try upping your pred to 10mg then go down to 5 and see what happens. Withing hours, all improved. However since then health is deteriorating again , but not with original PMR type problems . Others have commented about how lethargic they have been going down, so I cant decide to go up again , or ignore it and just go down. Life is so complicated. Could you please keep me updated on that other private or chat line or whatever about how u r going and what u r doing?

I will read your 9 replies tomorrow. Bed time here😴

[PMRpro Ambassador in reply to Flutterbies57]

Are you still at 10mg? Long Covid is a sod - can last much more than 2 months and masquerade as PMR or the like.

[herdysheep]

I have reached 4mg again but couldn't really say problem free. Think the adrenals are having a good laugh and hard to describe the fatigue politely. Feel 10 yrs older in last couple of months and nosebleeds are back big style with awful headache afterwards. In other words, feeling sorry for myself. And on the brink of tears or temper again.

[DorsetLady PMRGCAuk volunteer]

☹️ -hope you soon feel better😽

[herdysheep]

Thank you