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 convinced 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 to cause the inflammation - and contraindicated GCA or PMR.
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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Corda1983
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Hello Corda1983. First of all I'd like to say that I often receive posts late for this forum so you may well already have had replies. Secondly, your Mum has been dismissed with flimsy answers and needs more thorough investigations such as MRI/X-ray.
The jaw pain is a symptom of GCA but can be due to a number of other conditions. Double vision is also a symptom of GCA. An ultrasound scan would give a definitive diagnosis but this isn't widely available at present.
If you tell us where you are someone will suggest a reliable doctor/consultant.
I do hope you're Mum is able to get a proper diagnosis soon. This is an horrendous time for her and of course you.
Thanks for your reply. I agree at least some kind of more thorough investigation is warranted. As mentioned below, we’re based in South East Wales though (Covid allowing) would be happy to travel at this stage to get answers from someone who understands this whole area in more detail.
Mum is understandably incredibly anxious, but we’re also anxious to get her off the steroids (if possible of course) and back on her cancer medication. That’s why we feel some more in-depth diagnosis is required. It’s very clear that Mum’s fears have only intensified since her appointment with the rheumatologist so one way or another we need to try and make rapid progress on either ruling GCA in or out.
It is possible to have arterial vasculitis without it affecting the temporal artery - and some of your mother's symptoms would fit with large vessel vasculitis affecting the large arteries in the trunk and neck. It is a bit complex but Fig 1 in this paper shows how GCA, LVV and PMR are related:
There ARE other things that can lead to the symptoms and any given symptom tends to occur in only a proportion of patients - less than 40% for most, including headache, but for some reason what many doctors, including rheumatologists, pick up on is the headache and are also convinced it must be temporal.
Ear symptoms are relevant because of potential 8th cranial nerve involvement:
You ask is there anyone to be recommended - there are people who will look at this as a whole that we would suggest are worth going to but since you don't tell us where you are it makes it difficult, especially at present.
Thanks so much for your reply. It’s a complicated situation as Mum hasn’t been diagnosed with PMR or GCA and it’s very difficult to understand what’s going on along with the cancer. She’s had quite severely raised CRP and ESR, but that came alongside an acute cough and low grade fever alongside a raised white blood count - so it’s hard to disentangle whether PMR/GCA might have been the cause. Since she’s been on the steroids, her inflammatory markers have gone down then back up, even on 50mg prednisolone - again another confusing one that could have to do with cancer or any other number of causes. Unfortunately we don’t have a baseline CRP/ESR for Mum so hard to reference against any other numbers from a few months ago.
We’re based in South Wales although, to be honest, we would be happy to travel (Covid allowing) to see someone (privately if necessary). I know Mum is now worried sick about this and feels she’s being ignored/misunderstood by the professionals who aren’t convinced it’s GCA. I just feel at this stage, to try and get a proper diagnosis and hopefully alleviate her concerns a bit we need to find a rheumatologist that understands this area and would take her concerns on board - she’s incredibly anxious.
IF - I say IF - it were GCA then it is possible that 50mg isn't enough to manage the inflammation, some patients need even more than that, especially if the disease is progressing.
Unfortunately S Wales is a bit of desert for anything much although I think there is a good rheumy at Vale - not that that is likely to help until this current wave of Covid is over. Rod Hughes in Chertsey is outstanding for lateral thinking (as well as being a very nice guy) and has been seeing patients privately all year:
Thank you so much for your recommendation! I’ll look into Rod Chertsey and the link you sent.
Yeah we’ve not found much in South Wales. I know there is a GCA rapid diagnosis team in Bristol but I think you need to be referred - so might see if that’s also a possibility.
Indeed, I have a feeling it’s going to be something of an uphill struggle! At this point in time I think I have to just shoot for the stars and hope I manage to get a few feet off the ground at least!
Sounds grim for both of you. What I don’t understand is why she hasn’t had a CT scan or MRI, or even PET scan (though might be a bit late for that after the Pred) to rule out some other cause. Even some infective cause like mastoiditis. Any infection symptoms would be suppressed by Pred but any organism would carry on. Given the effects of high dose steroid (which sound normal) on top of her panzopanib I’d be wanting actively try to rule out other things and cement a more certain diagnosis. As has been said you need a more holistic approach. It would also be a shame to be suffering the effects of large vessel vasculitis yet be on a not high enough dose of Pred to treat it while still suffering from its side effects.
Thanks for your input Snazzy - and yes I agree completely!
I believe she did have a head CT scan for the cancer a few months ago (which was clear for any suspicious issue) - but that was before the jaw pain and other issues cropped up. She also had a jaw x ray at the dentist a couple of months back which showed no issues, but again that was before the symptoms started.
I think a holistic approach is exactly what Mum
needs. And time is of the essence considering she also has cancer that we can hopefully manage with a new drug - but right now Mum feels in no state to take it. That’s why a rapid diagnosis of GCA would be so good - if we can reasonably rule out GCA that would make life so much easier and we could move forward in that direction. If GCA looks likely or can be confirmed, at least we can hopefully talk about managing the various issues as best as possible and finding a treatment pathway and plan that can work. So I’m hoping we can find a specialist who cares, who understands that situation and who can focus in on the issues and find a way for us to move forward constructively.
Hi just to say that it seems no one is linking the cough . I have large vessel vasculitis and initially started with a strange head pain ( nothing like a headache) and a cough that lasted several weeks. The arterial biopsy was negative but a cat scan showed it in all major vessels. Just try and get some one to listen to your mum
Thanks for your input Devoid! I’ll definitely try and get someone to listen. Mum has had a number of CT scans over the years (including recently) for her cancer and, to my knowledge none of them have ever spotted arterial inflammation. That having been said, the scans weren’t specially looking for that, so it might have been overlooked.
Either way, whatever it is, we have to try and get to the bottom of it ASAP. Thanks again for your reply!
I believe so. Mum has had non-contrast CTs in the past due to some potential allergy to the contrast (and also to spare the toxicity as she has CTs regular) but I believe the most recent ones have been contrast.
I know her oncologist is keen for her to have an MRI of the head and neck area to rule out any new lesions or cancerous growths that may be causing the issue (I think he is more suspicious it's cancer at this stage rather than GCA, despite Mum's convictions). I'm hoping to get that sped along as I guess if they come back clear of anything cancer related that narrows down what could be causing the problem.
Reading all the replies I tend to agree with your mum that the possibility of GCA is high. I had top teeth ache, tender head and painful jaw. My inflammation level on diagnosis was 515, but soon lowered once I started on 40 mg of Pred. I took myself off to our local NHS hospital and suggested to the doctor I thought I had GCA (I did) he said no as I wasn't presenting with many of the symptoms for GCA (really, what do they know) quite frightening isn't it? After a missed diagnosis of bacterial meningitis back in 1994, losing the sight in my left eye, there aren't many doctor I trust these days...we know our own bodies, don't we ?? I'd tend to get her on a higher dose of Pred if I were you.
Thanks for your reply Staplehurst - so sorry to hear about your medical misfortunes but glad you managed to get the GCA under control in time!
She’s currently on 40mg after starting at 50mg, so has been on the steroids for a few weeks now. In the meantime we’re going to try and work with her oncologist to rule out any other factors that could be causing the jaw/head pain issues. If her scans come back with another possible cause, that might answer our questions. If they come back with nothing, that has to increase the likelihood of GCA we would imagine.
Not a lot I can add here. It sounds like your mum needs diagnosing specifically for GCA by a rhuematologist. Most usual symptoms have already been mentioned above. I would add a couple like does she have any peripheral neuropathy (numb or tingling toes or fingers) often related to nerve necrosis resulting from atherosclerosis (furring in smaller arteries reducing blood supply to nerves. Have a look at her feet. It was the first thing my rheumy consultant checked for hard crusty skin (dead cells) when I initially presented. Also does she get the telltale small circular tender patch on the crown of her head. GCA eye symptoms are quite specific jagged circular lines in peripheral vision. My diagnosis was confirmed with a PET scan that showed inflammation throughout my entire arterial system, so maybe your mum needs one of those. I was offered a TAB but they are only 50% accurate and they can indicate GCA where none is present. They can also indicate no GCA where indeed it is present. So I declined and I have no idea why they call it the gold test. It can leave your face disfigured. That's the only extra I can think of right now, if I think of anything else I'll post here for you - good luck with your mum.
Thanks so much for your reply Brantuk. Mum has suffered from peripheral neuropathy for a number of years - confusingly though this can be a side effect of the cancer medication she was on until recently. She was on that drug for 7 1/2 years with great results, but it works by essentially limiting the formation of blood vessels to stop the cancer growing and spreading. That can obviously cause issues with the blood vessels in general though - with tingling and hardening of the skin at the extremities being some of the most common side effects. These were not debilitating for Mum, but she did get both symptoms. Hard to know whether this was a side effect of her drugs, some kind of vasculitis, or maybe a combination of the two.
I think a PET scan of the whole circulatory system might be a good idea!
"GCA eye symptoms are quite specific jagged circular lines in peripheral vision."Different patients report different effects - they can actually be quite wide-ranging. Which makes it more difficult of course.
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