Treatment plan for GCALLV relapse …

[LemonZest11]

Hello again, this is an update on the treatment plan now that my Rheumatologist has had time to study the PET-CT. It’s looking like the LVV has relapsed and doc has put a plan into action. She has me on 25mgs pred for 2 weeks, and then the usual taper: 2 weeks at 20, 2 at 17.5, 2 at 15, then 12.5, 10,9 etc, down to 5. She’s upped the tcz to weekly, aware that I get neutropenia initially, but she’s not concerned and will monitor with weekly bloods. She’s ordered a CT angiogram for neck, and the rest, down to lower limbs arteries to ascertain if there is stenoses or aneurysms. She has also referred for another bone mineral scan to see where that is. I’m going on antibiotics until I reach 20mgs pred, to protect from a heavy duty infection that I can’t remember the name of but it’s to do with pneumonia, three weekly for two weeks. Lots of information, I know, but I value your input.

[SheffieldJane]

I would feel well taken care of. She is being pretty thorough. Let us know how you get on.

Wishing you all the best!

[LemonZest11 in reply to SheffieldJane]

Thanks SJ, I am behaving myself and following orders so far. Xx

[DorsetLady PMRGCAuk volunteer]

Hope it’s sorts things out for you.. sorry to hear you’ve had to start again 😟

[LemonZest11 in reply to DorsetLady]

Thanks DL, always something 🙄 xx

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

True ! But that’s life.. 😊

[Rugger]

So sorry to know you've relapsed, but better to identify and treat it than not. The thing that worries me most is that you had no symptoms.

It seems that you are in good hands.

Take care and keep following those orders!

[LemonZest11]

Spooky. But we have it now so no symptoms is a bonus. Possible alternative sinister causes have been eliminated for now. Very thorough doc 🙏

[PMRpro Ambassador]

I think that sounds good - this is a different rheumy to originally isn't it?

[LemonZest11 in reply to PMRpro]

Yes, my original is retired on Friday after handover to this one. She's young and seems to know more, even though previous was pretty good. On doing a bit of digging on her, I see she's done a research project on GCA and she knows about Sarah Mackie. Name's Julia Murdoch.

[PMRpro Ambassador in reply to LemonZest11]

Do you know who she worked with? Claire Owen? Sounds promising though.

[LemonZest11 in reply to PMRpro]

Let me check it out. I'll get back. I'm exhausted after dog sitting a 5 month old Border Collie pup this week, bad timing but a good sleep tonight and I'll get the low down on her work with GCA.

[LemonZest11 in reply to PMRpro]

I couldn’t find anything that included work with Claire Owen, however I think they both trained in Queensland. Julia was the Study Coordinator on a project that aimed to establish and assess a collaborative Fast Track clinic for patients with GCA, during her time as Rheumatology Registrar at Royal Perth Hospital, which is where she was prior to this practice. Apparently the Rheumatology Unit at RPH has an interest in GCA. I’ll be seeing her again in two weeks so I’ll ask her about it, and about Dr Owen.

[LemonZest11 in reply to PMRpro]

I just found out that she runs a GCA-LVV clinic at Royal Perth Hospital on Thursday mornings.

[PMRpro Ambassador in reply to LemonZest11]

I knew she'd moved - but not where to.

[LemonZest11 in reply to PMRpro]

No, it's my doctor, Julia Murdoch, who runs the clinic. I will ask her if she knows Claire Owen when I see her next.

[PMRpro Ambassador in reply to LemonZest11]

Ah - right.