Possible GCA?

[Lenore58]

Hi,

I’m at my local ER, because for the past 3 or 4 days I have had a chronic headache, severe neck ache and significant fatigue. In addition, my left temporal artery is puffy and tender. No scalp tenderness. No fever, though I may have had a slight one last night. I woke up with a random sore throat this morning, but it was gone within an hour. Jaw claudication is hard for me to discern, bc I’ve had ha issues for a long time and it often feels fatigued.

Also, I’ve had PMR for just over a year, currently 8 mg. prednisone. (Starting dose 10, and I’ve been up and down in dosage as I have tried to taper,.) My inflammation markers have never been out of range, until about 2 weeks ago when my CPR was 2.3. My rheumy said that it could be attributed to having had Covid in early August. My thought is maybe it was GCA brewing.

I’m waiting on blood tests right now to check the markers again.

Any advice, questions, or info appreciated.

I just read a pretty recent academic article about the efficacy of ultrasound rather than a biopsy of the temporal artery. I plan to ask if we can do that instead of a biopsy if they advise one. The ER doc seemed skeptical and unconcerned.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you have to attend ER, and it may or it may not be GCA, but it certainly needs to be checked out.

You don’t have all the signs of GCA, but that’s not to say it isn’t that… it could be a hangover from Covid … and just remind the sceptical ER doctor that if is GCA, and he doesn’t check it out properly it MAY lead to sight loss… and he willing to take that chance?

Please let us know how you get on… fingers crossed it’s not GCA.

[Lenore58 in reply to DorsetLady]

Thank you so much!

My Covid case was so mild. Like a short cold! But it’s the most unpredictable, insidious illness, so I suppose it could be that.

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

Maybe, but if it was that mild maybe not, but as stated could account for raised inflammation markers … but I think you are probably correct in thinking it’s more likely a flare…and we do know our bodies better than the medics….

[Lenore58 in reply to DorsetLady]

Thanks, DorsetLady. Still in the ER. My sed rate not elevated, but CRP up to 2., which is mildly out of range. It was 1.3 just 2 weeks ago, so seems to be going up. They decided to “be safe” and gave me a dose of IV steroids. They are waiting to hear from ophthalmology to see if there is anything further they should do. Again, I haven’t had visual disturbance though.

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

Thanks for update - hope you’re home by now, with suitable advice and feeling better.

[Lenore58 in reply to DorsetLady]

Yes, home. The IV steroids took care of the awful pain and stiffness in my neck., so I’m grateful for that. But in the absence of an ultrasound of the swollen artery, or CT scan, like Mooreby below, it just felt like they just wanted to get rid of me. In fact, the PA who was attending me came in the room and said well we conferred with the ophthalmologist, and the good news is you don’t have GCA. I asked him how he could know that and why did they give the IV steroids then? He said well there’s no definitive test for GZA. I said there is an ultrasound and/or a biopsy that could have been done. And he looked impatient and asked me where I was getting my information. I told him “Look, it’s my body and my health and I research thoroughly if something goes wrong. I’m not just gonna take your word for your best guess.” And then he admitted that they gave me the steroids because there was a higher likelihood that I wouldn’t come back, and if they didn’t give them to me and something went wrong, I would blame them. I am glad that my neck ache is gone, but I am not feeling that I got adequate medical care. I live in a smaller community between the two big coastal cities of LA and San Francisco in CA. It made me wish I had traveled to one of the excellent hospitals in one of those cities. I still don’t know if it’s GCA or not, which makes me nervous. I will call my rheumy on Monday who is in a UCLA satellite clinic in my city.

I’m wondering if it can be GCA if my sed rate was normal and my CRP was only 2.0, which is out of normal range but not by much?

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

It could be GCA - and many patients don’t have raised markers, which is why symptoms must be the priority. As for biopsy and ultrasound they aren’t always useful if you are already on Pred.

Hopefully you will get something sensible from Rheumy- and you most certainly did the correct thing- always better to be safe than sorry.

Have a restful Sunday…

[Mooreby]

I recently went through the same events. I felt my treatment was very proactive. Knowing my PMR diagnosis, they immediately took blood, gave me a CT scan and started 1000mg of IV prednisone. I ended up getting another 1000mg IV for each of the next 2 days I spent 3 days in the hospital. I had a rheumatologist, ophthalmologist, neurologist, vascular surgeon, and a hospital specialist PCP examining me and conferring with each other.

A biopsy was not performed due to lack of surgical availability and being outside the window of too much steroids for an accurate result.

They should treat you as if you have full blown GCA regardless of having every symptom. It is worth being very cautious for the sake of your sight!

I had a terrible headache for a week, the suddenly jaw pain and blurred vision. No head tenderness. My blood counts were slightly above acceptable levels, but my counts are always above.

I hope things go well for you.

[Lenore58 in reply to Mooreby]

Thank you so much for sharing your experience! You can read my latest reply to Dorset lady above. I wish that the medical care at my hospital have been as thorough as yours. It felt like they just wanted to treat me in someway and get rid of me. It’s a little disconcerting not knowing if I do or don’t have a threat from GCA going.

[Mooreby in reply to Lenore58]

I live in San Diego, but was visiting family in Bethlehem, PA when I had symptoms and was admitted to the hospital so I did not have my regular doctors. (I personally believe stress triggered my symptoms) I was fortunate that they treated me so well (at the time I thought it was overkill) My doctors here have also been excellent since my return. After I was released I was on 60mg prednisone for 2 weeks and now on 50mg for 2 weeks. My rheumy has also scheduled a MRI and a MRA that I will have towards the end of November due to lack of schedule availability. My insurance has already given pre approval for these tests.

I hope that you will get the answers, solutions, and pain relief soon that you deserve. Best wishes to my fellow Californian!

[watercolours]

To be honest, you're right to be concerned about GCA! Have you any update to your symptoms or treatment? I do think the very least they should've done was put you on 60mg + of prednisone for a week, given the uncertainty of the diagnosis!

[Lenore58 in reply to watercolours]

Hi Watercolours,

I had a consult for a temporal artery biopsy this morning, and I’m going back this afternoon to have it done. I’m not very happy about that, but there’s no ultrasound expertise in my area, so I don’t have that option.

My doctor has ordered an MRI, as well. She told me that if I have any visual disturbance to immediately take 50 mg of prednisone. So I’m on the alert for that.

I still have had no visual disturbance. I feel constitutionally unwell. Fatigue, malaise; like I have the flu or something. No energy. Constant dull headache, left temporal artery puffy and slightly tender, sinus congestion, occasional dry cough, and constant extreme neck-ache and stiffness. The head and neck are worse upon waking; usually at 4:00 a.m. I take extra strength acetaminophen (paracetamol) and am able to get back to sleep.

A couple of things that make it hard to know whether it’s possible GCA is that my jaw always feels tired after chewing because of long-term jaw issues. I am prone to headaches, but have never had a headache for this long. And besides, PMR, I also have degenerative discs in my cervical spine, and osteoporosis there. So it’s hard to know…especially in the absence of visual disturbance.

I hate to get my face sliced for nothing! I heard that when you’re on long-term steroid use that sometimes the biopsy comes back negative anyway, even if you have GCA. It’s also confusing.

[PMRpro Ambassador in reply to Lenore58]

It can come back negative even under perfect conditions of no pred. But it does sound as if your doctor is on the ball, knowing symptoms are also pivotal.

[Lenore58 in reply to PMRpro]

Biopsy was done yesterday. Results not till Monday. Waiting to hear when MRI will be.

[Mooreby in reply to Lenore58]

I hope it went well without lots of discomfort. Did they just do one side or both sides? Hope you are feeling better soon.

[Lenore58 in reply to Mooreby]

Thank you, so kind. They did only one side, fortunately, the one with the puffy, slightly tender artery. It was pretty uncomfortable; I woke up every hour or two last night. It feels less painful this morning, but my neck and head still hurt and I feel facial pressure, and feel generally crummy; fatigue and malaise. still no visual problems, fortunately.

[watercolours in reply to Lenore58]

I hope you're feeling somewhat better since the biopsy, it's a rotten procedure to go through, there's no two ways about it! And especially when it doesn't give a definite result! To be honest your symptoms you've explained are very similar to those I experienced, but I've always said that I felt the temple area of my face felt it had been bashed with a plank, it was so tender! My rhumy, who I managed to see early that morning, immediately prescribed 60mg pred, which did deal with things quite quickly, thankfully! Then I had an episode a week later, and it was then decided to do a biopsy, which was negative, which really was no surprise as I'd been on 60mg for 10 days at that point. The liklihood of your biopsy coming back positive is probably low, and if it comes back negative, what is the doctors course of action? I really hope you can get some clarity and treatment quickly!

[Lenore58 in reply to watercolours]

Hi,

Thank you for your empathy and the info. To be honest, I wish my temple area, felt like it had been bashed, so that I felt more certain of the likelihood of GCA. The doctor ordered MRIs and MRIs, but I won’t get those until next Thursday. I’m a little nervous and wondering if I should start taking 50 mg of prednisone now. My rheumy seemed to think in the absence of any eye symptoms that I could wait for confirmation from the tests, but that doesn’t seem to be what the literature advises.

Thankfully the incision has felt less achy since this morning. My head and neck still ache, and still so tired.