iV hydrocortisone taper: I've just had surgery for... - LUPUS UK

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iV hydrocortisone taper

whisperit profile image
18 Replies

I've just had surgery for lacerations to my lower half. As part of peri-operative care, my normal daily dose of 5mg methyl pred has been supplemented with four 500mg daily IV infusions of hydrocortisone.

I've had this for 48 hours and the surgeon now says I'm ready for discharge. However, hes unwilling tp wriye the discharge letter or TTA script until he's had advice on an appropriate taper from his endocrinology colleague. ("I'm a surgeon, not a doctor") This might take another 2 or even 3 days.

What advice/experience do others have of similar circumstances?

Thanks

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whisperit
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18 Replies
misty14 profile image
misty14

Sorry to read whisperit that you've had a big op but glad you are starting the recovery process. The surgeon is being a good doctor in wanting advice re your steroid taper from Endocrinology. Surely, it shouldn't take too long to get their answer if they're in the same hospitsl. ?.

I've had 2 surgeries this year , but not as big as yours, and have Addison's like you. I went home from both with a proper steroid plan for afterwards when they stopped the hydrocortisone. I know all you want to be is home but be glad surgeon is being thorough and attentive of Addison's. You must be safe first for going home because until we are , we're in their care!!.

I do hope whisperit you make a good recovery. TAKE GOOD CARE. Xx

whisperit profile image
whisperit in reply to misty14

Thanks Misty. You're right, of course, though its so frustrating to feel Im only being kept in for something that must be a regular occurence.

I should add that the care here has been exemplary so far. Hope you are well on the mend now.

X

misty14 profile image
misty14 in reply to whisperit

I"m so pleased you had good care whisperit and i do understand your frustration as it does seem silly. Don't forget Addisons is quite a rare illness and not everyone in the medical profession knows about it!. I'm recovering well from the surgeries thanx and have had good results so far. Foot is slower than i thought it would be with more benefits to come .

I hope your home soon. TAKE CARE. Xx

Freckle1000 profile image
Freckle1000 in reply to misty14

Just a Hello Misty 🙂

misty14 profile image
misty14 in reply to Freckle1000

Hello lovely Freckle. How are you?. Xx

Freckle1000 profile image
Freckle1000 in reply to misty14

Hello the lovely Misty - I'm still hanging in there. Had a rough couple of years with non lupus medical problems - but things are getting under control now.

I'm typing this - before a slightly higher dose of pred kicks in that's making me utterly bonkers - a short quick dose blast to try and nip a flare in the bud before it takes hold.

How have you been ?

X

misty14 profile image
misty14 in reply to Freckle1000

Hello lovely freckle, WELL DONE for coping with such a lot. I'm so glad things are improving now and i'll keep my 🤞that the increased steroid dose kicks into touch your flare symptoms. What would we do without them?. Becoming steroid dependent was a little extra i didn't really need but i've learn't to live with it now. Last couple of years have been similar to you dear friend. I'm recovering well from 2 ops this year.

Will be finding out in a few weeks if i have a liver problem to add to the auto-immune mix!!. 🤞i don't.

Do hope you feel better soon and pop up when you are able. Xx🤞❤️💐🙏🦋

Freckle1000 profile image
Freckle1000

Hello whisperit,

Sorry - I'm going to be of no help whatsoever to your question - but just thought I'd say a big hello and hope you can escape from hospital soon.

It sounds very frustrating.

I don't know how functional the medical system is in the UK at this point in history - but I'm relieved to hear your care has been at least cautious and safe.

We've had huge health funding cutbacks here ( Victoria / Australia ) and I've never seen a medical system so dangerous or as abusive as right now. It's been such a fast and breathtaking decline across the board - even wizened old patients like myself are horrified at the sheer aggession spilling over at every level.

I hope you're not just putting on a brave face and you are been treated well ?

Hang in there. 🙃🙂

whisperit profile image
whisperit in reply to Freckle1000

thank you Freckle

Thats a kind thought. Im well into the familiar iatrogenic pathway now, post-surgery. A lot of pain that's treated with opiates; -> opiates causing nausea and vomiting -> can no longer take oral meds -> need iv meds - > run out of viable veins - >etc

So its a bit horrible right now and the drs have come up with reasons to keep me in....

Still, the staff really are good.

Interesting , and sad, to hear from the situation in Oz.

x

misty14 profile image
misty14 in reply to whisperit

Sorry whisperit your having such a tough time and are still in hospital. Keeping 🤞that it improves for you soon. Xx

Freckle1000 profile image
Freckle1000 in reply to whisperit

Yeah - we seemed to survive the post covid medical / social chaos - but now money's shorter across the board -inflation / lack of housing etc. the human reaction to it is a tipping over -

I'm sorry you're reaching such a low point in hospital right now. It sounds very confronting. I had a few stays in hospital myself last year - one with an infection I wasn't sure I could beat. It's a pity we can't go through these more frighening things at home.

PMRpro profile image
PMRpro

After only 4 days of a raised dose - however high - you should be able to drop back to your base dose without tapering. It is no different from using an acute course of steroid in other illness which may be 40mg pred per day for 7 days - in asthma for example. It isn;t long enough on its own to affect adrenal function.

whisperit profile image
whisperit in reply to PMRpro

Thanks as ever, PMR. That was my feeling too, but sometimes it seems there are always more battles yo fight than energy to fight them x

PMRpro profile image
PMRpro in reply to whisperit

Yup ...

whisperit profile image
whisperit in reply to PMRpro

consultant endo wants me to double stadard dose and add hydro infusions while an inpatient...

PMRpro profile image
PMRpro in reply to whisperit

Tell us how you get on!

KayHimm profile image
KayHimm

Hi whisperit,

I don’t have anything valuable to add regarding steroid tapering but wanted to say hi and send hugs.

It sounds like you are getting good care. I wouldn’t want a surgeon who discharged me without getting advice from the endocrinologist if I were steroid depend. It seems you are still in a lot of pain, too, and you may be better off cared for in the hospital since you are vomiting from the narcotics. Maybe they can adjust your medications. I am sensitive to those pain medications too.

I know it is a hard situation but try to focus on getting better. You have lots of friends here!

XxK

whisperit profile image
whisperit in reply to KayHimm

Thats kind of you, thanks, KH x

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