GCA tapering query

[SanG55]

Following my recent diagnosis of GCA, I had an appointment with GP after my pred being upped to 40mg daily. We agreed to me staying on 40mg for time being and he is happy for me to follow my tapering regime when ready - he feels I have known what to do during my PMR journey(thanks to support of this group). My question is that I am not sure when to start tapering as I feel a whole heap better already(about80%) but the threat of sight loss is an added worry. Any advice gratefully received, thank you as always 😊

[DorsetLady PMRGCAuk volunteer]

What tapering plan have you been given?

Some say reduce by 10mg until you reach 20mg .. but that doesn’t suit all.

Much easier is to reduce by 5mg a time -and every 3-4 weeks down to 20mg provided you feel okay at each dose.

Plus I’d want to be 100% at 40mg before I thought about reducing. Not sure how long you’ve been at 40mg -but you need at least 4 weeks.

[SanG55 in reply to DorsetLady]

Thank you, I have only been a week at 40mg. I’ve been using your DSNS (?) method with PMR and got from 40mg to 5mg before this little upset! I’ll wait for another 3weeks before trying anything. Thank you for your reply 😊

[PMRpro Ambassador]

I was going to say the same as DL - at least 4 weeks at 40mg and feeling stable before 5mg taper steps.

[SanG55 in reply to PMRpro]

Thank you for confirming DL’s advice, I appreciate it 😊

[PMRpro Ambassador in reply to SanG55]

DSNS was my baby actually - not that it matters because we share most things!!!! DL's is maybe simpler for people who want things to be on a weekly basis, I used a monthly calendar tocount the days out. It was an idea started by a Swedish member of the forum on what is now EMIS used by GP practices in the UK and I expanded it.

[SanG55 in reply to PMRpro]

Thank you to you both, for this and all the expert knowledge and advice you share so willingly 😊

[Grammy80]

As someone with GCA, your caution and awareness will serve you well. DorsetLady's advice will serve you well, reducing has to suit unique you. My best💞

[SanG55 in reply to Grammy80]

Thank you ☺️