GCA tapering query

[SanG55]

After being diagnosed with GCA early July, GO upped Prednisolone to 40mg (from 5mg for PMR) I am wondering what tapering regime for GCA is. I am still experiencing jaw claudication and vision changes (seeing local eye specialist tomorrow for check up). I am experiencing mood changes (which I suspect is Pred induced), raised HbA1 levels, reduced kidney function. Asking you knowledgable people for advice on tapering as GP has left it to me. I can only order two packs of 28 x 5mg Prednisolone at a time and it doesn’t go far when I am taking 8tablets daily! Thanks in advance 😊

[DorsetLady PMRGCAuk volunteer]

If you are still experiencing some symptoms then certainly no tapering for now -in fact an increase may be required.

You need to be symptom free before you reduce -guidelines do suggest 10mg every 2 weeks, but most of us would say that’s far too quick.

Some can manage that, many can’t.Maybe 5mg every 3 weeks until you get 25mg then 2.5mg monthly.

But your GP shouldn’t be leaving it up to you-you need Rheumy input, if only via GP. But a F2F appointment really -although I realise that may not be easy.

[Koalajane]

are you not being overseen by a rheumatologist as it doesn’t seem as if you are on a high enough dose. I don’t have GCA but I thought it fell to the rheumatologist to look after you. Please don’t consider tapering yet and speak to your GP about it

[SanG55 in reply to Koalajane]

Thank you. No rheumy input at all. I’ll look into this 😊

[123-go]

Hi. I completely agree with DorsetLady and Koalajane in that GCA should be managed by a rheumatologist-at the very least initially. Reading your previous post it seems that his/her opinion is that as you were managing your PMR successfully you are able to do the same with GCA. This is not so especially in the early stages which should be overseen by a specialist. The following link will, I hope, encourage you to politely insist on urgent referral to hospital rheumatologist.

versusarthritis.org/about-a....

[SanG55 in reply to 123-go]

Thank you, I’ll look into this 😊

[PMRpro Ambassador]

If you have GCA and 40mg isn't fully managing your symptoms - you need an emergency referral to a rheumatologist. You would need a referral anyway - but here, the GP is obviously totally out of their depth and GCA is a parallel to a heart attack or stroke - especially with the red flag symptoms of visual changes and jaw claudication,

And frankly - if the GP can't be bothered, you need at least an emergency appointment with a CUES optician who MAY be able to refer you directly to the ED and possibly a trip to the ED yourself with the sob story of a GP who is ignoring persistent GCA symptoms.

Where in the UK are you?

primaryeyecare.co.uk/servic...

[SanG55 in reply to PMRpro]

Thank you. My optician is on that list and I am seeing him tomorrow morning. Will update with outcome . Thanks again.

[Grammy80]

I was dx with GCA in 2019~I can only speak from my experience. Recently I got to zero pred with Actemra and after a flare and receiving steroids IV, I am now on 5mg per day. With symptoms like 'jaw claudication' I know my rheumatologist would have me on more than 40mg. I'd never heard of PMR or GCA and did not know the seriousness of my symptoms. I truly hope you can get to a rheumatologist and get proper dosing and taper plan.

I was misdiagnosed for almost a year....your doctor my be saying what he is out of ignorance. I still find professionals here in the States that don't have a clue about GCA. Without this forum, I shudder to think of the shape I'd be in. Please, take care of yourself💞

[SanG55 in reply to Grammy80]

Thank you. It will be interesting to see what the eye specialist says tomorrow. I think my GP went for 40mg as that was the dose I was started on with PMR 🤔 Thanks again 😊

[PMRpro Ambassador in reply to SanG55]

Trouble is - 40mg is very high for PMR but the bottom of the range for GCA,

[SanG55 in reply to PMRpro]

I am still learning, thank you to those of you helping me learn 😊

[Grammy80 in reply to SanG55]

Don't ever let waiting be costly to you...💞

[RunnerJoe]

I was diagnosed with GCA in late June, and my treatment lines up with the other posts in this thread. I live in the US. Initially I was put on 60 mg of prednisone, and I was tapered down 5 mg about a week ago. The plan is to taper 5 mg every 2 weeks. I also begin Actemra in a couple of days. I was fortunate to see a rheumatologist a couple of days after getting out of the hospital with the initial diagnosis. While I was in the hospital I received 3 daily IV infusions of steroids.

[SanG55 in reply to RunnerJoe]

Thanks for that info RJ, hope the recovery continues 😊

[KASHMIRI1]

I am a bit late answering you. I was diagnosed with GCA in2020. I was taking 12 5mgs a day when first diagnosed and had the same issue with only having 2 x 5mg packs. I contacted my GP and explained and he upped the script to 4 packets. I experienced various side effects that lessened as I reduced the pred dose. If you still have symptoms then its advisable to not reduce until you are stable.

[SanG55 in reply to KASHMIRI1]

Thank you for your reply. I am waiting to hear from GP today. 😊