STROKE CAUSED BY GCA

[gifford7]

Is this an uncommon occurrance? I was diagnosed with GCA nov 10, 2017, with partial vision loss. 20 days later had a left brain MCA ischemic stroke caused by the GCA, as verified by my stroke doctor and rheumo doctor. The initial dose of prednisone, 80mg/d, did not bring down the CRP; it was finally controlled in the hospital after the stroke with 1,000mg/d for 3 days. I have now tapered the 80 mg down to 10mg.

[SheffieldJane]

I am in no way qualified to pontificate but common sense would draw a correlation ie a blockage in an artery.

I just wanted to express my heartfelt sympathy for the terrifying experience you have come through and I also would be interested in how you are. That dose of Prednisalone defies all understanding. Best wishes. SJ

[gifford7 in reply to SheffieldJane]

The 1,000mg prednisone infusion for 3 days is standard treatment for GCA with vision loss at many institutions [but not at my clinic apparently]. My sister was diagnosed with GCA with vision loss in 2010, and was hospitalized for 3 days of 1,000mg prednisone infusions [midwest US]. I'm in the Stanford, Calif area and treated at the Stanford Stroke center.

The GCA and vision loss diagnosis and left brain MCA ischemic stroke 20 days later is a double whammy for me. The stroke caused impairment in short term memory and right hand motor function. I was noted to be the most active stroke patient in the hospital, walking all over the place due to the stimulation of all the prednisone. I'm a folk dancer

and continue to dance. Prednisone taper now down to 9mg.

[SheffieldJane in reply to gifford7]

You are clearly amazing - wow!

[PMRpro Ambassador]

I doubt it - just in most cases they haven't diagnosed the GCA to associate it. There is a higher risk of stroke in the first year after diagnosis of GCA and the damage done to the optic nerve in visual loss in GCA is exactly the same process as in a stroke. The case we often quote as a justification for "yes, you CAN have GCA when under 50" was of a 37-year old man in South Wales who died of a stroke and at post mortem was found to have had undiagnosed GCA.

The 1,000mg/day for 3 days is a recognised approach to GCA with threatened visual loss - it is called a pulse therapy. Some doctors say that the tapering process subsequently often goes better - which seems to correlate with your reduction from 80 to 10 in just 8 months. Perhaps it is a shame they tend not to start with this very high dose approach.

[Rimmy in reply to PMRpro]

I am wondering though PMRpro what a dose like THAT would do to your 'head' - I only just coped at 60mg for a short period - although I am still at 14.5mg over a year later, Yours is however - an interesting hypothesis - that of an initial very high dose - possibly enabling a faster taper. I wonder how often this has happened and if anyone else on the forum has had a similar experience ?

[PMRpro Ambassador in reply to Rimmy]

No idea - I do know of a few. But then - there are relatively speaking only a few with GCA...

[DorsetLady PMRGCAuk volunteer in reply to Rimmy]

I started at 80mg (after sight loss), and probably got through the first few weeks, if not months when on high doses in a slight state of shock! And conversely, in a state of euphoria with other eye being saved and not being in the excruciating pain I’d been in for the previous year or so!

Apart from being able to talk for England and lack of sleep for about 6 weeks my “head”was okay!

The initial high dose didn’t make my tapering any quicker per se, but I certainly didn’t have any flares, so it obviously “got a good grip of things” from day one!

[Mikb in reply to Rimmy]

I was immediately started at 80 mg prednisone in ER (Canada) when they suspected GCA, even though blood tests all normal. When GCA confirmed after biopsy, was called back to hospital and had 3 days of 1,000 mg iv. There was eye involvement as well.

[HeronNS in reply to Rimmy]

No doubt this is one reason you are hospitalized, to be kept under observation in what should be a safe environment. I was accused of being like the Energizer bunny when on only 15 mg pred - although I thought it was because I was so happy I could move again! Can't imagine what 1000 mg would have done - enabled me to climb walls, perhaps?

[gifford7 in reply to PMRpro]

At the time of the original GCA diagnosis and vision loss the optho doc gave me a choice of 80mg/d oral prednisone or 1,000mg by infusion, with no mention of which was better [also no mention of 2nd and 3rd by infusion]. It was 5;30pm Friday and the clinic was closing. I decided it was easier to stop at the drugstore on the way home for the 80mg.

2 weeks later the CRP was still very high. 20 days after the GCA diagnosis had the stroke and finally got the 1,000mg x 3 infusion at the hospital which brought CRP ESR to normal, Then was told i made a big mistake by not initially requesting the infusion at the time of GCA diagnosis, or in the days immediately after, which would have quickly brought the CRP down and might have prevented the left brain MCA ischemic stroke.

[PMRpro Ambassador in reply to gifford7]

There is someone else on the forum who had a similar experience in that the doctors said at first they would do an infusion but then changed their mind and gave oral pred. The next morning vision was gone in one eye. It is impossible to know whether it would still have happened with the infusion - but an infusion delivers 100% of the dose immediately so starts working straight away. Oral prednisone must be absorbed and processed in the liver - taking a couple of hours at least.

But really - that was the doctor's call and mistake. How should a patient who has probably never even heard of giant cell arteritis know which to have?

[HeronNS in reply to gifford7]

It wasn't your mistake. I wish you a good recovery.

[DorsetLady PMRGCAuk volunteer]

It is a recognised part of GCA, I think it’s just potluck on what arteries in your head are affected. My temporal artery (which is the one that’s always referred to) was never enlarged nor painful, it was the ophthalmic artery that caused my problems.

Fortunately my other eye was saved with 80mg, but that dose was obviously not enough to control your GCA.

Just for info, my bloods were tested about every third day during the first two weeks, so the doctors were on top of things.

[Asbeck]

Dear Gifford7: I am not an expert. But I have had strokes. I do have a neuro-ophthalmologist, and although I have sight from my optic nerve I have had eye damage, presumably from GCA. My doctor was baffled as to why I "still" had GCA after more than 2 years. (We've heard that before.) So with his position at the eye hospital he had my brain scanned somewhere behind my eyes. They found stroke damage (TIAs), I can't remember exactly, but it was not two (a couple) maybe they said a few or some. But luckily I didn't have the typical stroke symptoms which scare people who take you to hospital. That said, my spouse was baffled with my disease to the point of thinking that I was a hypochondriac, and I did not have a lot of support. It could have been that I presented with some minor stroke symptoms and no one was there to notice. I began the disease in spades when I was 64 years old. I've had it for 5 years. I don't know at what age I had the strokes, but the doctors have known about them for about 2 years.

[gifford7 in reply to Asbeck]

Asbeck, I hope you also have a rheumotologist treating your GCA. My neuro-opthalmologist said he doesn't treat anything below the neck. My sister has had GCA PMR with vision loss, since 2010 with her condition followed by a GP only. Recently diagnosed with a heart murmer from aoritis which required repair of aneurysm and aortic valve replacement. I had a CT scan of my aorta showing I don't have that problem. Drugs I take because of the stroke include aspirin 81mg and atorvastatin 40mg [lowers LDL, raises HDL]. My CRP ESR measured every 2 weeks for 6 months and now monthly. My prednisone tapered down every 2 weeks, from 80mg to 9mg. [did have a flare 1st time I went to 11mg and went back up to 20mg]

[Asbeck in reply to gifford7]

Thank you gifford7 for worrying about me. I really appreciate it. I do have a rheumy. But as you seem to suggest I need a cardiologist. The neuro-ophthalmologist had an echo done on my heart and my carotid artery after I had a amarosis fugax. But that was years ago. So I will get on it. (I asked my rheumy to refer me to the echo people--didn't happen.) We have to try the best we can to take care of ourselves. I'm so very sorry about your stroke. I wish for you every avenue to a full recovery. (Interesting that both you and your sister suffer from GCA.)

[gifford7 in reply to Asbeck]

Giant cell aortitis is another disease associated with GCA and PMR; apparently my sister has all 3 diseases. It calls for periodic aortic CT scans about every 2 years I believe, as prescribed by your rheumy. More info at this link describing a study at the Mayo Clinic in MN. [Minnesota has a high percentage of those with Scandinavian roots]. academic.oup.com/ejcts/arti...

I do have a cardiologist due to arrythmyia. The Zio Patch heart monitor I wore for 10 days post stroke clocked pulse rates between 46 and 195. Am on a beta blocker and an ARB.

[Asbeck in reply to gifford7]

Thank you gifford7. I'm on it (the getting a cardiologist)!