GCA taper info please

[Viola1]

I see my rheumy and a neurologist today for PMR/GCA and want to be prepared with taper info. After a flare I am on 65 mg pred for 3 weeks. At this dose I have no symptoms other than some pain and tenderness at the base of my skull (hence the neurology appt) that is helped by Tylenol and CBD oil.

I have needed a somewhat higher than typical dose of pred from the beginning.

What is a reasonable taper?

Also, I’ve had a stressful couple of very long days, feel fatigued, and wonder if I should wait a bit before starting the taper. As much as the jitteriness at this dose gets to me, I much prefer not having all the GCA symptoms and don’t want to rush things.

Thank you to all on this forum - I’m grateful for your help.

[DorsetLady PMRGCAuk volunteer]

Hi,

I started higher than that (because of sight loss in one eye. Then as follows. Don’t say it’s typical of everybody, but should give you some idea -

I doubt if your doctor will agree, they always want you off quicker, but life has a habit of getting in tge way!

If you reckon a month at each dose as an average you won’t go far wrong.

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.

[Viola1]

I feel very confused about what’s what.

I had a neurology work up and I have an MRI for my neck on Sunday. The neurologist thinks some of the head symptoms might be related to occipital nerve inflammation and I’m starting gabapentin tonight. Other options are a nerve block via injection or nortriptyline. I

My rheumy is very concerned about the high dose of 65 mg

Pred but gets that a quick taper wouldn’t work for me.

She suggested going down by five mg every two weeks. And also to go on Bactrim to avoid pneumocystis and other rare diseases until I am at 20 mg prednisone.

Any advise?

[PMRpro Ambassador in reply to Viola1]

I asked a top rheumy in the field about the Bactrim - it is used in other forms of vasculitis when patients are on really heavy-duty immunosuppressant drugs but she said it isn't really seen as necessary for most GCA patients. I only know of one other who was put on it.

There is some evidence that starting a GCA patient with a very high dose pulse therapy for 3 days allows the subsequent reduction to go better - and probably results in less pred overall than using high dose oral steroids for longer. Might be worth asking?

I hope the neurologist bears in mind that the occipital region of the brain is a favoured haunt for GCA

[Sho-Sho]

I started at 60mg for GCA not 80mg, but I was very lucky as I had no eye problems - I think the tapering is such a personal issue as everyone reacts so differently. My Rheumatologist told me to drop in 10mg steps but it was far too quick for me and ended back in hospital again purely because my body couldn't cope with it, whereas someone else might be fine. I then went onto 5mg drops every two weeks. - but you might be able to drop faster than that at the high levels. The fatigue is a major symptom of the Arteritis, I still have it now even at 7.5 mg - the most important thing is to taper slowly and stop if you have any symptoms of the bad headaches, jaw aches coming back.

I have for the last year followed Dorset Lady's Dead Slow Drop Method and found it brilliant.

Hope this is helpful -Good Luck.

Sho Sho

[Viola1 in reply to Sho-Sho]

I will taper slowly.

Here’s the symptoms of occipital nerve inflammation-

Occipital neuralgia can cause intense pain that feels like a sharp, jabbing, electric shock in the back of the head and neck. Other symptoms include:

Aching, burning, and throbbing pain that typically starts at the base of the head and goes to the scalp

Pain on one or both sides of the head

Pain behind the eye

Sensitivity to light

Tender scalp

Pain when you move your neck

These are the symptoms I was ascribing to GCA. The website also says blood vessel inflammation can be an associated disease.