GCA Study Article

[Lenore58]

Hi all,

In all my research and scouring of the Internet, I found this article (below my update) which is quite informative and also recent. I don’t know if it has been posted before but I thought some would be interested.

An update on me: I was put on 60 mg of steroids a week ago because GCA symptoms confirmed by a positive temporal artery biopsy. I felt better for a few days, but then my original symptoms reappeared.l: generalized headache, facial pressure, fatigue, and now, my right temporal artery is puffy and tender. (Only the left had been previously, which is the one they biopsied.) I feel worried about this, though my rheumatologist is reassuring me that 60 mg should be doing the trick. (It’s 10 mg. above what is recommended for my weight.) She did send me for bloodwork to make sure my inflammatory markers are not going up, but down instead. I should have those results tomorrow. Tomorrow is also when I will have my MRIs and MRAs on head and neck. I will check back in to report the results.

I’m so grateful to have this group.

uptodate.com/contents/clini...

[SnazzyD]

It’s possible you need higher but it is early days. In the first few months I found that symptoms tried to creep back if I over did it. There was no question of carrying on as normal just because the Pred was doing the trick of subduing the inflammation of my immune system that was still a runaway train. I don’t know if it helps, I was on 60mg for almost a week and 40mg for 6 weeks before reducing further and I was 117lb.

[DorsetLady PMRGCAuk volunteer]

You may need slightly longer at 60mg - or maybe a higher dose -a week is not that long.

Took about 2weeks for my headaches to fully be resolved -was on 80mg at the time but had lost sight previously-and then 8 weeks at 60mg.

[Lenore58 in reply to DorsetLady]

My doctor said I’ll be staying on 60 mg for six weeks. I am so sorry that you lost vision, but you are such an inspiration in spite of it DorsetLady.

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

🌸

[SheffieldJane]

Some people need 80 mgs or above to obtain relief. Blood tests for inflammation cease to be so helpful once you are on Pred. ( it is what they do).

[PMRpro Ambassador in reply to SheffieldJane]

Markers are still meaningful with pred - it is tocilizumab that means that markers are meaningless.

[PMRpro Ambassador]

60mg SHOULD do the trick - but some need more and some rheumies use a 3-day pulse therapy of 1000mg per day by infusion for a start before settling at 60mg - and that certainly deals with the inflammation!

But as Snazzy mentions - have you been doing more the last few days because of the boost of the pred? You probably feel as if you have wings - and you don't.

[Lenore58 in reply to PMRpro]

thank you for raising that question snazzy and PMRpro. I think you just hit the bull’s-eye and why my symptoms went up again. I felt better for three or four days and then I made a big production of a meal for a friend whose hubby has cancer. And I prepped and barbecued and rushed too much, took the meal to them, and likely overextended myself. It was that night that my symptoms flared. I’ve been doing nothing but resting since then. Thank you for the reminder that I need to baby myself.

[PMRpro Ambassador in reply to Lenore58]

Yup - QED!!!!! You are a poorly person, with a SERIOUS systemic illness. You need to behave like one

[SnazzyD in reply to Lenore58]

Ouch! That would do it. You now have to act like an ill person but it doesn’t help when Pred is funnelling in go juice. You are precious cargo and need lots of tlc; GCA is a serious business.

[SpaghettiWestern99]

Thanks for this posting. I followed the link to the PMR site

uptodate.com/contents/clini...

Found this to be very informative

[Lenore58 in reply to SpaghettiWestern99]

Yes, me too. And further links to other articles I want to look at.

[Mooreby]

So sorry that you are having some difficulties and hope your symptoms do dissipate soon. I am also on a rollercoaster with blood counts and symptoms since my hospital treatments of 1000mg.

I have completed 60mg for 2 weeks and have been on 50mg for 2 weeks I am due to go to 40mg tomorrow for a week. The other day I had a vicious headache making me feel sick. I happened to have blood tests the same day. My CRP was 23 (normal is 0 to 5), high glucose, and low chemistry for anything that fights infection, bacteria, etc.

I did see my rheumy yesterday and told me since I do feel fine from my episode to keep on my reduction schedule, but if symptoms come back to immediately go back up to 60mg. She is also getting pre authorization from my insurance for injectable medication (starts with an A, I forget the name, I've got to look it up) that I would do 1x a week to help me get off prednisone. I need to do a bunch of test to make sure I am healthy enough to start this medication.

I hope your journey will positive and with less symptoms. Best wishes to my fellow Californian !

[PMRpro Ambassador in reply to Mooreby]

Actemra - an IL-6 inhibitor which is the main cause of GCA although there are others implicated. It allows a faster reduction of pred - though doesn't work immediately and may not get you off pred entirely if the other causes are present. Biologics are very specific in action.