I'm a GCA patient, having been on PRED for 5 weeks, starting at 60 MG for 2 weeks, then 50 for 2 weeks, and now 40 MG for another week. My original GCA symptoms were a strange, new headache over the right temple and a significant loss of weight over a period of several months. My CRP levels were only slightly elevated and my ESR readings were normal. I had a positive temporal artery biopsy which confirmed the diagnosis. In fact, the ophthalmologist who performed the biopsy said "hmmmm, I've done quite a few of these and I can already tell you this artery is inflamed." Of course, it was confirmed in the lab.
I know I'm supposed to watch out for flares while tapering the PRED, so I'm surely watching out for headaches. But aside from that, there's little else to watch out for. My CRP and ERS are now WAY DOWN (supposedly because of the PRED), but as I said they were never high to begin with.
So here's my question:
Ought I have undergone some kind of imaging to see how much of my vascular system has been affected by this disease? And if so, it is too late (because I've been on the PRED for 5 weeks)?
Thank you!
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montebello
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It's not too late for imaging which is carried out to detect disease activity but whether that would be appropriate at this point in time I wouldn't know. You could, perhaps, discuss this with your doctor who will give you more information. It pays to be informed and it's good that you are asking questions. 🙂
After 5 weeks on the level of dose you have been on there is little likelihood that any imaging would show much. The most useful imaging in this context would probably be PET-CT but it is suppressed by as little as 10mg pred. In a case of PMR they might persuade you to reduce the dose to below that to do the scan but it would be too risky to do that in GCA, especially since the GCA was confirmed with the 100% certain option of biopsy. If they were going to do it, they should have done it immediately.
I've just read PMRpro's reply and may well have confused you. When you referred to your 'vascular system' I took it to mean the arteries throughout your system and not just the cranial arteries. I apologise if I've misled you. After I had suspected temporal arteritis my consultant decided to carry out axillary imaging which, in my case proved fortunate.
What's confused you? The best imaging for vasculitis in the trunk is PET-CT - it measures uptake of labelled glucose given to you as an infusion. All the inflamed bits take up more glucose so shine up like beacons. The brain uses lots of glucose anyway and so the signal swamps surrounding tissues and all looks the same. But even low doses of pred will suppress the signal. And you are still on LOTS of pred.
Join the club 😀. There are many people on the forum far more experienced and knowledgable than I would ever profess to be and I'm happy to learn from PMRpro and others.
I speak through my own experience in this instance:
I had a PET scan when I was taking a low dose of Prednisolone (2.5mg) which provided evidence of a vasculitis process. Six months later I had an axillary (underarm) ultrasound scan which showed inflammation in several arteries. My pred was increased by only 2.5mg to 5mg and later on Leflunomide was added primarily as a disease modifier. I'm in no way suggesting that anything remotely like this will be found in your case so please don't be at all alarmed. I'm just illustrating the fact that I had these imaging tests at a low dose of prednisolone.
Hopefully, your rheumatologist is the type who is willing to listen and discuss things with you whenever you have questions and express concerns. Also, please come back here to read what others have to say. This forum really is an extremely valuable resource.
Can I ask about the ‘strange new headache over the temple’, was is severe and continuous?
I’m having a bit of pain (discomfort) that comes and goes over my left temple, which happens to be the side my ear is blocked with ear wax. I had similar on the right hand side until the ear wax was removed last week.
I don’t know whether to be concerned or not. There’s no tenderness of the scalp, or claudication of the jaw, and I can feel a pulse at the temple.
GCA headache is usually described as the headache like no other - and it rarely comes and goes. The fact you had a similar effect with wax on the other side suggests that might be the first place to look?
Sure. My headache was severe and continous for about 48 hours, and was between my right eyeball and right temporal artery. Then the pain subsided and changed to a pain along the legs of my eyeglasses... i wondered whether or not my glasses causes the pain. I took Tylenol for the latter headache and it diminished substantially. In fact, i almost dismissed the possibility of GCA until someone on this forum told me same thing happened to her and it WAS GCA. So i agreed to the biopsy and, sure enough it was GCA. I also had jaw WEAKNESS, but no jaw pain. No tendetness on temporal area. I hope this helps.
It does, thank you very much. I’ll get the ear wax removed and hope it goes the same way as the other side did. Strange (?) that ear wax can mimic GCA type pains. It demonstrates how difficult it can be to diagnose.
I had a telephone appointment with a locum the week before last to discuss dosage of Pred for PMR / Adrenal. She phoned me back 2 hrs later to warn me of the medical emergency of GCA symptoms. It raises anxiety if you’re someone like me, knowing the ‘stakes’ could be very high indeed. I know worrying is not the best thing to do if you have an ai disorder.
I surely understand that anxiety is not good for these types if disorders, but if the threat of blindness or stroke is not anxiety producing I don't know what is. GCA is just about as uncertain a thing as I've ever had to deal with, but I'm a person of faith and that's what's getting me through this... along with the folks on this forum.
All I can say is that I had a PET/CT scan after 1 yr on 15mg+ pred, and then 3 weeks on 60mg. It did show 'some' GCA and LVV, though the time lapse obviously wasn't ideal - probably down to a waiting list.
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