I posted a couple of weeks ago and got some great feedback, so thanks to everyone who gave their advice! I'll try and keep this brief (and there's a more thorough explanation in the previous post if anyone is interested) - long story short, Mum had advanced kidney cancer and is also convinced she has GCA and has some of the symptoms (elevated CRP/ESR, some pain behind the ear and in the jaw). However 50mg of prednisolone didn't seem to offer much relief and, in that time her inflammation markers have gone up (she was on the 50mg about 4 weeks). The rheumatologist she saw doesn't think it's GCA (based on a physical examination which showed no abnormalities) and they want her to come down off the steroids, and the cancer could in theory explain her inflammation as we know she has active sites of cancer, mostly in her chest lymph nodes causing some discomfort, coughing and bleeding (she's due to have radiotherapy on them).
It's a real conundrum as Mum is convinced she has GCA and is understandably very scared about tapering off steroids - but she feels truly awful on them and can't take her new cancer med as a result. She's currently tapering down and is at 35mg - I spoke to a specialist that was recommended to me via this site and he was very helpful. Although he couldn't examine Mum because of lockdown, he informally advised me the worst of the GCA effects (blindness, stroke etc) are very unlikely on doses above 20mg of prednisolone, so we're taking a compromise approach and trying to get Mum down to 25-30mg of prednisolone, back on her cancer meds and go from there.
It's all a bit of a rock and a hard place but I really think we have to try and get as a firm a diagnosis as possible to either rule in or out GCA, as the middle ground is not going to work long-term. Mum recently had a head and neck CT scan which showed no signs of cancer or any other abnormalities, so we're fairly sure it's not cancer or infection causing her jaw/head pain.
I appreciate GCA is not easy to diagnose and there's no standard test or procedure, but I feel we have to try and narrow it down - it would be awful if Mum was neglecting her cancer and enduring the steroids for no reason, but of course I also understand her fear if she neglects the GCA and something bad happens.
This is entirely layman thinking, but I wondered how accurate biopsies/ultrasounds/PET scans are after time on steroids? In particular, because the steroids have not eased the pain, nor brought the inflammation down on blood tests, whether there might still be evidence of inflammation/arterial damage? My understanding is that scans or biopsies after steroids tend to be less effective because, in most cases, the steroids will be successful at treating the GCA, leaving less obvious signs of it on examination. However, it seems that if Mum does have GCA, hers would be very much active, with no real let up in the physical symptoms or the inflammation markers.
Clutching at straws a bit I know, but trying to think how we move forward once Mum gets down to 25mg or so of steroids. In an ideal world she will come down off them safely, but obviously that's not possible if we can confirm GCA, and she's too scared to keep coming down at the moment, and doesn't really trust the opinion of her rheumatologist.
Thanks again for any thoughts/advice or experience you can offer. It's so useful to have a community like this and it really has helped us so far!
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Corda1983
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Hi. I had both temporal and axillary ultrasound scans (on 2.5mg Prednisolone). The temporal scan was ok but axillary scan showed very active inflammation in the aorta which was seen clearly on the images. The scans were prompted after a PET scan. I hope your mother's issue will be resolved soon; she must be feeling in limbo right now.
Thanks so much for getting back to me! She certainly does feel in limbo - she feels it's an impossible situation, but we know one way or another we have to move forward so just trying to sound out the best route.
Hi, A biopsy is bit hit and miss at the best of times - it’s reliant on the very small piece of artery taken as a sample being affected by GCA - and very often it isn’t, even if the patient obviously has the illness.
Scans can be more accurate, but only if the inflammation is still there, which as your mum has pain may well be the case.
As you say, you are between a rock and a hard place - but as your mum has a positive case of cancer and an unknown for GCA, you probably have to address and treat the known and hope it’s not GCA.
Thanks so much for your input DorsetLady! I've read that biopsies are not without their problems, even at the best of times. I'm going to try and push for an ultrasound of the area, but unfortunately because her doctor's aren't really convinced I feel it's going to be hard to make progress - might see if I can do it privately, but even then I think we will still need a referral, so I will have to try and organise something.
I'm in total agreement that Mum should treat the cancer and remain vigilant about the GCA - unfortunately Mum isn't really thinking too clearly at the moment and I think the idea of going blind has (understandably) got her so terrified she's sort of paralysed in the worst of all worlds - taking 35mg of prednisolone (down from 50mg) which is still having a pretty awful effect on her, but unwilling to taper too far down (out of fear she will go blind) or go higher (because of fear of the side effects). We're trying to get her to see the situation for what it is and make a proactive decision based on the current evidence and doctor's opinions, but sadly she's not really in the same frame of mind!
The biopsies/ultrasound/PET scans are all affected by high dose steroids so won't be conclusive- biopsy and ultrasound aren't conclusive even at the outset as you can only use them on specific arteries and they may not be affected at the time, GCA forms what are called skip lesions which means some areas are affected and others remain healthy. PET scans are particularly affected by pred even at lower doses but they are also only useful for inflammation outside the head as the brain takes up a lot of the tracer and that swamps the emissions nearby.
However - whatever it is, she appears not to trust anyone which is a major problem.
I agree - the lack of trust is becoming a real issue. She's always had health anxiety of sorts, which is understandable when you're dealing with advanced cancer, but since being on the steroids I've noticed a real agitated/fearful edge - she's become incredibly downbeat, convinced of her own diagnosis and is essentially unwilling to listen to anyone else. It's a real bind as GCA is hard to diagnose at the best of times, so when you're dealing with someone who is absolutely, completely convinced against the suspicions of her own medical team, it's hard to see a way to convince her or confirm her diagnosis.
We have our suspicions it's not GCA - just because of the relative rareness of the condition, the bounding, healthy nature of her temporal arteries (though I appreciate that's not a definitive diagnosis) and the fact her jaw/head pain isn't really classic GCA sounding - her jaw/ear area seems to hurt most of the time, and there's some cruncing/clicking she feels when opening the jaw. In addition she doesn't really get headaches or intense head pains, more a general ache in the area. She also has no problem when the area is palpated or brushed. I know that GCA symptoms can be highly variable (sometimes no symptoms at all) so appreciate these symptoms could still be GCA - but I also appreciate her doctor's concern that it's far from conclusive, the pain could be explained by quite a few other things and it's hard to interpret too much of the CRP/ESR whilst she has advanced cancer, which is almost certainly contributing to, if not solely responsible for, the high inflammation markers.
I think I will have to try and push someone for an ultrasound. It won't be definitive, but it would hopefully at least be suggestive for or against GCA and convince Mum to move forward in some direction. If she does have GCA, it's clear the current steroid dose is not controlling it, and if she doesn't, the quicker she can safely taper down and focus back on her cancer the better.
Thanks again for your input. I too have wondered about the psychosis. I haven't noticed anything like hallucinations or extreme behaviour, but I've certainly noticed a definite personality change since being on the steroids, and her absolute conviction of a bad outcome does seem almost delusional at times. At any rate, they're certainly fuelling her fears and contributing to the sense of dread/conviction about how bad everything is.
I know she had an X-Ray at the dentist a few months back which seemed fine. She also had a CT scan recently (though without contrast) which didn't pick anything suspicious up, either cancer or non-cancer. She had an MRI today at a complement to the CT so that should give a more complete picture. However I suspect it may be something more like TMJ or even spinal/muscular. She suffers a lot with very tense muscles in the area, and also some mild compression in some vertebra too. Again, none of that conclusive, but I can see why her doctors are suspecting there's a more likely diagnosis than GCA. However, I can also understand Mum's concerns and fears about misdiagnosis.
I had TMJ pain a few weeks ago - sudden clunk and pain while eating. All soft tissue tightness - the physio worked on it and it was like a miracle after one session!!
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