Tapering : Was wondering if some of you could write... - PMRGCAuk

PMRGCAuk

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Tapering

aladymo profile image
8 Replies

Was wondering if some of you could write me briefly your tapering routine. I have GCA ( LV vasculitis ) PMR and PVD.

E.g

60 mg - 6 weeks

50 mg - 4 weeks

40 mg - 2 weeks

35 mg - 1 week. Flare

40 mg - 2 weeks

EtcEtc

I’m just curious when (If) you got flares.

Just a heads up for me, thank you.

Written by
aladymo profile image
aladymo
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8 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

This may or may not help - not typical. Initally kept a high dose because already lost sight in one eye (after 18 months with no diagnosis, no treatment.

Start dose April 2012

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

15mg - 6 weeks (Xmas period)

2013

14mg - 3 weeks

13mg - 4 weeks (1st 4 days @ 13.5mg)

12mg - 10 weeks (1st 4 days @ 12.5mg)

20mg - 2 weeks***

17.5mg - 2 weeks***

15mg - 2 weeks ***

17.5mg - 4 weeks***

25mg - 3 weeks ***

***Raised ESR, due to stress over hubby being very ill, liver cancer diagnosed and subsequently dying. No GCA flare.

20mg - 4 weeks (slow taper)

15mg - 6 weeks (slow taper) - changed surgeries

14mg - 2 weeks

13mg - 9 weeks (Xmas)

2014

12mg - 10 weeks (slow taper from now on)

10mg - 3 weeks

9mg - 6 weeks

8mg - 6 weeks

7mg - 6 weeks

6.5mg - 6 weeks

6mg - 12 weeks (visit to NZ)

2015

5.5mg - 6 weeks

5mg - 8 weeks

4.5mg - 6 weeks

4mg - 10 weeks (unexplained neck/back pain)

3.5mg - 5 weeks

3mg - 9 weeks (back pain)

2.5mg - 6 weeks

2016

2mg - 5 weeks

1.5mg - 6 weeks

1mg - 4 weeks

0.5mg - 16 weeks (couple of false starts, plus holiday)

Zero.

No flares!

For certain periods when I expected stress, I decided to stay on a dose longer than usual.

aladymo profile image
aladymo in reply to DorsetLady

Perfect. . 4 years I see. 😭. Thank you. Just what I wanted to know. Glad you are well and continued good health 🙏🏻

Janstr profile image
Janstr in reply to DorsetLady

Thanks DL. This is very helpful as I myself have been wondering how long to stay at each level. I'm currently on 11 having tapered down from 40 in January last year. For some time ( since a flare in May last year when on 15mg), I have been gradually going down 1/2 mg every fortnight.

Before each taper my CRP is tested & it started to go up just before Christmas when on 11.5 ( I knew I was doing too much). Although still in the normal range, I stayed on 11.5 for another 2 weeks. My CRP at that time had gone back to 1, so I started the taper to 11.

After 2 weeks tapering to & on 11, my CRP had gone out of the normal range up to 7; this could be due to a swollen ankle the dr thinks is caused by some sort of vasculitis. So almost a week later I am still on 11. I was intending to get another blood test in a couple of days to make sure the CRP is not getting out of control ( I have GCA), but based on what you have written, wonder if I should stay on 11 for another week & then get the test?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Janstr

Hi.

As the inflammation is probably caused by your ankle not GCA then it’s probably not necessary, but as Pred fights inflammation then it’s not going to do any harm either!

Me - I would have gone another week at 11mg.

Janstr profile image
Janstr in reply to DorsetLady

Thank you.

Theziggy profile image
Theziggy

More tapering plans here steroidtaper.azurewebsites....

aladymo profile image
aladymo in reply to Theziggy

Great site. Thanks ❤️

HeronNS profile image
HeronNS

It might be the ankle. But I wonder if you'd be wise to slow the taper down to once a month now, especially as your dose is getting relatively low and your body will notice the change each time.

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