update

[Oscarsnan]

I took the 10mg of hydrocortisone with my 6.5 of Prednislone a few days ago and I felt terrible high bp,blurry vision, high anxiety.So I’ve now decided to taper instead so yesterday I started on a 0.25mg taper and I’m feeling a tad better. I think I need to taper rather than add anything in as I think my adrenal glands are trying to kick in and the hydrocortisone just mucked things up.

[SheffieldJane]

I would be afraid of managing this without the oversight of an Endocrinologist, following a morning cortisol test followed by a Synacthen test if deemed necessary. The Adrenal system is very complex.

Was the hydrocortisone supposed to be a kind of safety net as you came off Pred?

My Endocrinologist hasn’t suggested anything like this. He has a very high profile in the field.

[PMRpro Ambassador in reply to SheffieldJane]

I was flummoxed by that too. I think the idea was that she could have more steroid to make her feel less fatigued but the HC would be out of the system quickly and not interfere with triggering the adrenals overnight.

[PMRpro Ambassador]

Although some doctors don't think of it, HC has potentially the same adverse effects at pred - but also has effects of its own and several people have found they just can't cope with HC,

[Oscarsnan]

Just been to see Endocologist my yearly appointment I could cry he has really upset me I thought he’d be pleased that I’ve got down to 6.25 but he just said that is still far too much! I’ve really been through it getting to that dose like a lot of us. I told him my basal cortisol test was 525 and he said that means nothing as I’m still on to high a dose. He didn’t ask if I’d started adding in the Hydrocortisone so I didn’t tell him. I’m struggling with anxiety and that has just made things worse.

[DorsetLady PMRGCAuk volunteer in reply to Oscarsnan]

Sorry to hear about appointment 🌸 - I do wonder sometimes about what happened to a caring profession in some cases!

[SheffieldJane in reply to Oscarsnan]

My Endocrinologist told me that my face was fat, and asked if it had always been that way. The student sitting in on consultations gasped in horror. Don’t let them get you down. I am proud of the fact that I never took my grumpy moods to work - ever. 😇

[Thelmarina in reply to SheffieldJane]

Good grief! What an idiot! It’s lovely when someone betrays themselves like that - you are instantly in a superior position. Did you say ‘Oh dear - you don’t know about the effects of steroids. I’ll send you the information. ‘ Or ‘That was tactful! 😂😂😂

[PMRpro Ambassador in reply to Oscarsnan]

Some of them just don't think about the fact we need the pred for 2 things at this stage. I;'d complain about being treated like that.

[Oscarsnan]

Thank you 🥰