The correct way to ween down on hydrocortisone? Advice please.

[Suffolklady]

My last post was when I was just starting on 20mg of hydrocortisone changing from prednisolone and needed advice. Further down the line more advice needed please. On Monday I tested Covid ‘Positive’ I had avoided it since the first day that dreaded name was on everyone’s lips so it was a shock to find I now have it. I feel rough to say the least. I doubled up to 40mg a day (originally been on 2x5mg morning, 5mg mid day and 5mg at 5pm.) It’s been 4 days now but I don’t know how to ween myself down with hydrocortisone when I need too so can someone advise me please. This is new territory for me only used to managing prednisolone increases and decreases. Also did anyone have any of the NHS treatments available to vulnerable people? How did you find it? Thank you

[piglette]

You can get anti virals if you are considered vulnerable but you are probably a bit late for them if you knew you had Covid on Monday.

[Suffolklady in reply to piglette]

It’s 5 days Piglette according to the NHS website. I just wondered that’s all.

[piglette in reply to Suffolklady]

That is assuming you got Covid on Monday and you can get anti virals by tomorrow and you count as vulnerable. I had a letter from the NHS saying that I was entitled to them, have you been contacted?

[Suffolklady in reply to piglette]

Yes I have my letter too. They wanted me to go to the hospital. Contacted GP first then 119 referred to 111 who said to be assessed at the hospital.

[piglette in reply to Suffolklady]

I think in your position I would not have bothered to go to hospital either unless I was ill enough to need an ambulance.

[DorsetLady PMRGCAuk volunteer]

If you are following a version of sick day rules which says so long as you don't stay on increase for more than 7 days , you can probably drop back to previous dose as you would have on Prednisolone.

healthunlocked.com/pmrgcauk....

[Suffolklady in reply to DorsetLady]

Must be a glitch I only posted the once. I don’t know how to remove the other one?

[DorsetLady PMRGCAuk volunteer in reply to Suffolklady]

Just go to the other one.. underneath post you see options.. reply, save etc..

Select More V, then Delete.. it will probably ask you if you are sure..

[DorsetLady PMRGCAuk volunteer in reply to Suffolklady]

See you’ve managed.. 😊

[Suffolklady in reply to DorsetLady]

Only with your help. ☺️

[Sillydogsmum]

I am in the throes of an almighty flare 3 weeks after Covid. Didnt have any Paxlovid because I had very little respiratory symptoms but did do 7 day sick day rules because I felt so awful. Saw my GP today who said antiviral not particularly effective for current variant anyway and probably wouldn't have protected me from flare. If you have the slightest PMR Symptoms in addition, be not reducing your steroid back down too quickly methinks. (Sick day rules are to protect adrenal function if you are poorly, not specifically to prevent a flare, see link in FAQ)

[Suffolklady in reply to Sillydogsmum]

Thank you Sillydogmum I did think that it’s probably best to carry on regardless. Rang 119 and they suggested ringing 111 to get accessed at hospital. Best stay at home unless I’m dying. According to my Rheumatologist after a scan on my shoulders a MRI scan on my neck and no inflammatory markers I haven’t got PMR anymore as of the letter last week I was waved goodbye and sent to the pain clinic (already been with them since 1998).

[Sillydogsmum]

Others better informed than myself will probably pile in to say that if you are on steroids its not possible to assess that you dont have PMR.

[SheffieldJane]

I dropped straight down without additional problems. Give it a few days. You have my sympathy it’s weird and horrible and it carries a lot of media baggage. Treat it like flu - soluble panadol, plenty of fluids, lots of rest, cheerful TV. Get well soon!

[Suffolklady in reply to SheffieldJane]

Thank you SheffieldJane. It’s not the best feeling in the world. Even worse that I have to cancel long awaited hospital appointments and a final part of a root canal. Last few day all I did was sleep.

[MrsNails]

Hi Suffolk Lady

Hope you are starting to feel better?

My Mum was on Long Term Prednisolone for Brittle Asthma for many years at 60mg daily, she eventually got down to zero but ultimately had to go on Hydrocortisone after having an Addisons Crisis……

She remained on Hydrocortisone until she died, however if she had a Chest Infection or a bad Asthma Attack her GP would always start her on a Course of Prednisolone so it could be stopped after 5 to 7 days so it never impacted on her Hydrocortisone.

Not of any help for you this time but it is something you could discuss with your Doctor if you ever needed it in the future.

Best Wishes

MrsN

[Suffolklady in reply to MrsNails]

Thanks for the information Mrs Nails. I’m hoping that too.

[RT18]

No, you need to taper down with hydrocortisone- I have had my head in all this info tonight. Eek I’m not sure how to post a link - I will do a screen shot for you

Info

[DorsetLady PMRGCAuk volunteer in reply to RT18]

To add a link in your post/reply to a website/page of that site .

Go to page you wish to link – select the URL address etc at top of screen. Once selected it should show a blue background, and you will get a drop-down menu. Select Copy.

Go to where you want to add link in your post/reply. You should then get option – select Paste – and voila there it is…

Press Post or Reply as appropriate and the link should appear in blue lettering. That shows the link has worked. If it doesn’t turn blue, then recheck you have copied the whole address correctly.

[Rubinluc]

I have adrenal insufficiency so I'm on hydrocortisone for life. When I have double dosed I reduce by 2.5 mgs per day, lowering the dose at a different time each day. If I started to feel 'unwell' I would increase again by 2.5 and delay decreasing further until stable, but it has never happened.

[Suffolklady in reply to Rubinluc]

Thank you for your useful reply. It takes a bit of getting used to as I have only been on hydrocortisone for four months now and never had to do any variants. I have only 5 mg tablets do they do others in different amounts or just halve them?

[Rubinluc]

I have Accord hydrocortisone tablets, which are scored to great into quarters.

[Rubinluc]

Correction to reply:Break into quarters, not 'great into quarters'