Does this sound like GCA - and what next?

Hi all,

I'm actually posting on behalf of my Mum. Will try and keep this succinct but it's going to be difficult!

So, Mum is 60 with advanced renal cell carcinoma. However, her cancer has been kept under control for years with a type of drug called pazopanib and has been relatively limited, although it has started growing again slightly recently.

Mum has believed she's had PMR for years, but it hasn't been formally diagnosed. She convinced her oncologist several months back to allow her to go on a short course of low dose steroids (prednisolone) which she said improved some of her PMR-like symptoms. However, as she began to taper down she noticed some of those symptoms returning along with a sort of hard to describe head pain/ache behind her right ear. She also noticed some jaw pain on the same side that she describes as relatively constant, but that gets worse upon eating.

So, as she was tapering she suddenly gets a low grade fever, a terrible cough and this jaw pain. Is admitted to A+E and her ESR and CRP are found to be pretty high (ESR over 120 I believe). Her lungs are clear and she's sent home. Cough resolves and the fever doesn't return. She makes an appointment with a rheumatologist (who she said was terrible - showed no interest/understanding of her case) and convinces him to go on 50mg of prednisolone. She says this improves her jaw/head symptoms mildly but they remain.

Mum was on the 50mg for about 3 weeks and they've had a pretty dreadful effect on her. Diabetes, high blood pressure, major fatigue/weakness etc. She saw another rheumatologist about a week ago who doubted she had GGA because the pulse in her temporaral arteries was bounding and there didn't appear to be any sclerosis or blood flow issues. In addition her inflammatory markers had gone down but then back up again whilst on the high dose steroids, which suggested to the rheumatologist that something else was happening.

The problem is, Mum is utterly convinced she has GCA and really won't be told otherwise. She has an obvious extreme fear of going blind and now she is tapering down from the 50mg (currently at 40mg) she says the jaw/behind the ear pain is increasing. And, the biggest fear here is that at the moment she can't even take her cancer medication because she feels so weak/exhausted - we are keen to get her back on the cancer meds but she feels unable to take them whilst on the steroids, but also terrified to come off the steroids or taper down as she's convinced she has GCA. It's a tough one.

She doesn't appear to have all of the GCA hallmarks. She doesn't get headaches as such, nor does she get temple or occipital pain (instead it's around and behind her ear). She also doesn't appear to have significant shoulder weakness or pain - though I understand GCA is hard to diagnose and no one symptoms rules it in or out. But it's also curious that the steroids didn't seem to have an appreciable impact on the pain/discomfort - might have reduced it somewhat, but not definitively. She does have some visual issues (double vision sometimes, general visual deterioration) but we also know she has cataracts and of course is now diabetic, so that may or may not explain those things.

Just looking for some input really. Does this sound like GCA? I appreciate a diagnosis is not possible on a forum but I'm just looking for as many voices as possible. I'm not 100% convinced it is, and neither is the rheumatologist, but I also appreciate we could be wrong. Mum is absolutely convinced it is, but she's going purely on how she feels. Quite frankly I'm not sure there's a doctor in the world who could convince her otherwise anyway, but we want to do everything we can to try and (hopefully) rule it out, reduce her steroids and get her back on her cancer meds.

Is there any specialist or place it might be good to turn? At this stage I just need to sound out all options, try and get some kind of definitive diagnosis and get a plan together for Mum to move forward with or without a GCA diagnosis. Thought it would be good to ask those in the know and get some informed opinions. Thanks in advance for any help or input you can offer!

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