Reduction of Prednisolone and Anxiety

[Ellie11711]

Hello, I was diagnosed with GCA in June 2022, after the condition was missed by 3 doctors so the condition was allowed to brew for some time. I was prescribed 60 my a day of Prednisolone, I have been reducing over the past 9 months and now down to 8 my. I am now experiencing anxiety, loss of appetite, and lightheaded, I rang the vascular clinic and have increased the Prednisolone to 10 mg. I’m hoping I will have an improvement soon and wondered if this is common when reducing Prednisolone.

[SnazzyD]

It may well be your Pred level is getting low enough that your adrenal glands need to start working to make up the shortfall with the body’s own cortisol. This often doesn’t happen seamlessly and one can feel like you do along with other symptoms until things wake up. Have a read of these links form Mrs Nails’s FAQ’s form the right of this page and see what you think.

healthunlocked.com/pmrgcauk...

[Ellie11711 in reply to SnazzyD]

Hello SnazzyD, thank you for your kind response. I’m very grateful for the information. As I explained to Dorset Lady sometimes I felt unwell when reducing but it would settle but It's not settling this time, and I’m very fearful that GCA is returning, it's very worrying, and I’m probably making myself more anxious. I have an appointment at the vascular clinic tomorrow. Many thanks again.

[SnazzyD in reply to Ellie11711]

low adrenal function can make you feel horrible and it’s a bit of a shocker when one is led to believe low doses will be wonderful after the horribly high doses. It does get better but you need to really slow down your 0.5mg reduction span and possibly take it easier too to avoid general stress on the body.

I also agree with DL that 9 months is nothing really and you need to slow down not least to be able to really judge whether your inflammation is building up again. The scary thing is knowing which is which but hopefully you’ll get to know what low adrenals feels like and the patterns through the day as well as after reducing.

[DorsetLady PMRGCAuk volunteer]

At the level you are, would say it’s adrenals - see this -

healthunlocked.com/pmrgcauk...

…as you have got to 8mg from 60mg in 9 months, it’s no wonder they are struggling - and link explains why.

[Ellie11711 in reply to DorsetLady]

Hello Dorset Lady, Thank you for your speedy reply and helping me. This diagnosis came as a shock 9 months ago, I have been very fortunate regarding my health and not needed any kind of regular medication until now. I am very grateful for the information and advice. When reducing the Prednisolone sometimes I felt unwell for 10 days but then things would settle and I felt okay, but since I dropped to 10mg per day, I have felt quite poorly and was thinking that the GCA was coming back. It's very worrying. Thank you so much.

[DorsetLady PMRGCAuk volunteer in reply to Ellie11711]

Actually the GCA is still there and likely to be for some time -it just that the inflammation caused by it is under control when you are on the correct dose of Pred. Drop below that dose and the inflammation is likely to build up again and cause pain.

It is easy-ish to taper at higher doses with GCA -but as you get below 10mg there is less “excess” Pred to juggle with.

Took me as long to get from 10mg to zero as it did to get from 80mg to 10mg.

Maybe have a look this if you haven’t seen before -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

I would say exactly the same as Snazzy and DL have said. I would also add that it is reasonable to be concerned that the GCA is still active after on 9 months - it really does have a propensity to wake up with speedy tapering in the first 18 months. So DO keep watch for any worsening.

This group recommended staying at 10mg for a year after the initial taper which actually is about what you have done, They found their approach reduced the risk of flares from 3 in 5 to 1 in 5 and Professor Quick is now a specialist in GCA at Luton and still uses the taper they describe - because it works:

rcpe.ac.uk/sites/default/fi...