Update on GCA and thickening of internal carotid artery

[Blurry62]

I'm creating a new post to follow up on my previous one because I cant locate old posts. Help?

The cardiologist said, yes its marginally thicker and doesnt concern him at this time. Still taking baby aspirin every day. Cholesterol levels are awesome and the opinion is the thickening is a result of GCA.

Diagnosed February 2018 and currently tapering to 6mg of prednisone with no methotrexate or actemra. I opt not to take either. If I were to relapse I would consider actemra depending on how much prednisone I'd need to control the flare. I very much hope, of course, that this doesn't happen.

[Sally001]

You stated that are taking baby aspirin daily; I didn't think we were supposed to take aspirin with prednisone, or is baby aspirin different from regular aspirin??

[PMRpro Ambassador in reply to Sally001]

It's used the same as low dose aspirin for cardiovascular disease - but it was removed from the recommendation in the most recent set because they feel the risks in terms of bleeding outweigh the benefits.

[Blurry62 in reply to Sally001]

Ive taken enteric coated low dose aspirin since diagnosis because of stroke risk associated with GCA. Fortunately haven't had issues with it. The only irritation I've ever experienced was while on 30 mg, or more, of prednisone --and that was improved by eating huge breakfasts before taking it.

[PMRpro Ambassador]

All your old posts and replies are listed on your Profile page.

[Blurry62 in reply to PMRpro]

Thank you

[Rugger]

Having had PMR since early 2016, my GCA-LVV was diagnosed by PET-CT scan in November 2019. My aorta and its branches, including carotid arteries were all inflamed. I also had a CT scan which showed no structural damage, which I presume meant no thickening. My Rheumatologist says I will have further scans to monitor the situation after I stop Tocilizumab. I am coming to the end of my year's 'ration' of TCZ, but am still on 5mg prednisolone.

[Blurry62 in reply to Rugger]

I'm on 6.5 prednisone right now. I don't understand what value actemra would be to me if I'm still going to be taking any amount of prednisone.

Specialists seem to disagree on what level of maintenance prednisone is acceptable. One guy told me 7mg is a win! Another just says if I can get down lower, itd be best.

[Rugger in reply to Blurry62]

The idea was to get down to zero pred with the aid of Actemra and I was tapering the pred at 1mg every 28 days. However, when I got down to 3, 2 and 1mg my symptoms returned, hence the increase back up to 5mg. With the end of my 'ration' of Actemra in sight, that's where I'm staying for the time being.

[Keepingsane]

Hi Blurry62,

Diagnosed with PMR about 18 months ago I am currently on 12mg prednisolone, plaquinal and Actemra which I started 10 weeks ago.

I have noticed that the discomfort I had in the hip & butt region that had kept me off my bike has all but gone. I am never quite sure why I get a change either good or bad but this change is very good and noticeable.

It would appear that Actemra has been positive for me.

[Blurry62 in reply to Keepingsane]

I appreciate you sharing positive experiences with actemra. It may well be in my future. : )