tapering down prednisolone from 5mg

[Eternity6]

I’m feeling under the weather to say the least very tired keep falling asleep , sore throat lots of mucus in throat and nose, I do not have covid have had lots of negative lateral flow tests, it all started a few hours after a I caught a chill outside few hours later this happens, I’m tapering down from 5 mg pred I’m now on 2 mg for last 6 weeks, I was getting on really good and now since caught virus I’m falling asleep, spoke to my consultant four weeks ago after blood test results he said the my liver levels were rising and I might have to go up a milligram, but would wait until I have the first blood test of being on 2 mg which is happening next Tuesday! Anyone else have fatigue when tapering down, incidentally I’ve been taking pred for approx 16 years continuously I’m 65 next week, apart from this glitch I’ve been doing well

[AyrshireK]

It may be that having been on pred so long your body isn't able to produce it's own cortisol. From reading AIH facebook page over the years I think lots of folk struggle with the taper from 5mg.

On subject of covid, the latest BA 5 variant is not showing on lateral flows. I have been groggy for about 4 weeks with the first 2 weeks being really quite ill (very similar symptoms to those you describe) I never got a single positive test but had all the same symptoms as my auntie who also didn't test positive till she squeezed every bit of fluid from a throat/nose swab. So don't rule it out as being the cause of your issues - including your ALT rise.

Katie

[Eternity6 in reply to AyrshireK]

oh thank you Katie,drinking lots of water hot drinks chicken and veg soup trying to help get rid of the mucus , oh so you have been similar to me , keeping positive and soldering on, it’s really really quite unpleasant

[AyrshireK in reply to Eternity6]

I've got a really sticky throat, coughing a lot still and feel a bit wheezy and tiring easily (I am the healthy one in our relationship - hubby the one with liver disease).

My 'covid' symptoms included fatigue, being sick, sore throat, hot, cold, stinking headache, no appetite, night sweats. Tested daily for a fortnight - sometimes multiple times a day yey never showed as +.

Hope you feel better soon

Katie

[Eternity6]

oh really nothing showed, I’ve never really had what I call a lot of trouble with AIH had it since young teenager or even before my specialist seems to think, but now with this very annoying mucus and tiredness is getting me down, I just thought I’ve caught a chill and since I’m tapering down on steriods it must be the fact my adrenal glands now not working how they should, my appetite is opposite to yours I’m staving all the time 🙄no headache no cough taste smell still fine, temp 37, thanks Katie I really hope you feel better soon

[Flowergirl24]

Hi Eternity

Have you had the Short Synacthen test as you are tapering down. I’ve been on pred for almost 3 years (not as long as you) starting off on a huge dosage. This was tapered down to 5mg after my liver transplant when it was suddenly stopped. That was a big mistake as I was so I’ll and couldn’t even get out of bed. I went back on to 5mg and it was tapered down very, very slowly. After my 3rd Short Synacthen test in July and no changes, I do have adrenal insufficiency and will be on 3mg. If I do become ill ie flu or a heavy cold, I have to increase my dosage to 10mg. I was also given an Emergency Hydrocortisone 100mg injection kit to administer if I have an adrenal crisis. The size of the needle was huge so I’ve opted to take 20mg instead of poking myself in the leg!

All this info was explained by my Endocrine Nurse Specialist.

Hope your felling a little better.

Flower girl

[Eternity6]

I’m going to email my consultant flower girl, I’m full of mucus and coughing no temp I’m starving all the time taste still ok smell ok , the mucus making me cough! Lateral flows several are neg, I’ve got more energy today but I need to know should I be going up on my pred I’m 2mg, from 5mg which was starting to taper in feb this year, yes I’ve had two of those tests since I’ve had autoimmune hep, but not for years, probably last one 5 years ago, actually I’m going to ask about this, I have my next liver blood test in five days hopefully this mucus has gone or I will be cancelling it, bless you you have been through a lot, how are you doing now, Are you in U.K.