Hello, my first time here, hoping for some help! I developed symptoms of GCA (temple pain, scalp pain, headache, jaw claudication, swollen squiggly temple arteries, scalp sensitivity, eye soreness) a month ago, following a bout of covid in October.
However, due to my age - 45 - I have struggled for a diagnosis and therefore treatment.
A rheumatologist did a blood test which was normal (CRP 0.9, ESR 2) and an ultrasound which was normal. Ten days later, as my symptoms worsened, we repeated blood tests (CRP 0.6, ESR 2) and ultrasound. Again normal.
I saw another rheumatologist for a second opinion, but he also said nothing more could be done.
My symptoms are quite severe and I am sure the covid triggered them. I would like further investigations - such as PET scan or biopsy - but no one will do them given my age and normal test results. I cannot try steroids to see how I respond, as I am allergic.
Do you have any advice on how to take this forward?
Many thanks!
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Did anyone mention that up to 20% of people, who get PMR/GCA, do not have raised CRP/ESR markers, which makes it more difficult to make a diagnosis. The doctors then have to go on the symptoms alone.
Thanks piglette, yes I heard this. The doctors seem to think the figure is lower (published papers online do say it's more like 4% but who knows) and coupled with my clear ultrasound and age, that seems to "override" their interest in my symptoms. Crazy really.
The 4-14% seems to apply to ESR only. There's less research on the chances of CPR & ESR being normal in the same individual? Not sure. In any case, it's rare but by no means impossible.
I have PMR, my ESR and CRP were never out of range - CRP only went up in response to atrial fibrillation one day but the ESR was raised at times, 16-18 when MY normal is low single figures so in range, ignored. SnazzyD had normal range markers - whilst sitting in the ED with her vision shutting down. I even heard of one patient told "if you weren't under 50 I would diagnose PMR because that is what it looks like".
Hayreh was the champion of "occult GCA" although he insisted CRP must be raised - but he also said that it must be considered even if the ESR and CRP were normal if the symptoms fitted.
The trouble with GCA and PMR is a widespread refusal to accept that they can manifest in under 50s. If you don't LOOK for them, you won't FIND them. Of course, it is a piece of nonsense to claim that the immune system keeps note of your birthdays and waits until you are 50 to go wrong in a particular way. And if you are male and under 50 - no chance it seems. This is a report of a 37 year old man who died of stroke linked to undiagnosed GCA. the pathologist is always right - but too late.
In fact, if you read the literature there are warnings about dismissing GCA in younger patients and in patients without the "typical" symptoms. It doesn't present in a particular way and none of the "typical" symptoms are the presenting problem in even half of patients and often in fewer than 20%.
But you can't do PET-CT in every headache patient - if only one might feel. But it is difficult enough getting one when GCA is strongly suspected.
Yes, the 'male and under 50' is really counting against me here. Viewed alongside my normal bloods and ultrasounds the probability of me having GCA is deemed vanishingly tiny. Yet my symptoms are strong and very suggestive of GCA.
Is it worth me pressing hard for a PET scan? I have been offered an MRI (no contrast at my request) but a PET was deemed unjustifiable. I worry the MRI will be a waste of time.
You're a male? You didn't mention that in your profile - those sort of details are quite important really, as is country of residence.
All you can do really is pay to see someone like Rod Hughes privately and let him assess the likelihood. Because he will discuss it and not rule it out out of hand. I have given you another link to a study about U/S - you have a negative result there. Prof Vanessa Quick at the Luton and Dunstable Hospital is developing an algorithm for GCA diagnosis because it is very difficult sometimes but as far as I know she doesn;t do private work. And there ARE other things that can cause the same or very similar symptoms to GCA. In a young male, ankylosing spondylitis is also comething to consider though it would usually be causing spinal and neck symptoms as well.
The NHS isn't going to hand out an appointment for PET-CT lightly - they are expensive, prioritised for cancer patients, not that many devices, so long waiting lists and not used routinely in GCA/PMR.
As PMRpro has said the 'male and under 50' might have elicited some slightly different responses.. PMR is one of those illnesses where it can be viewed negatively!
That’s as maybe, but GCA or possible GCA should be treated as a serious condition.. and If it looks like a duck, walks like a duck and quacks like a duck, then it just may be a duck.😳
I can sort of see why I've been discharged given my age, gender and normal bloods and scans. However my symptoms have become agonising now and its difficult to get through the days. I really hope to see Dr Hughes soon. Thank you for all your helpful advice, and to PMRpro.
Part of the diagnostic process for GCA is ruling out other conditions. Part of that is something like a PET scan or MRI or CT of the head. I had a CT in A&E because they wanted to rule out a head lesion or bleed for example. So they have ruled out GCA, rightly or wrongly, what is their opinion from here and the next step they would take as a medical professional? If they won’t refer you on somewhere else (budgets) what do they advise the GP? Did they offer any theories at all?
45 is not out of the question for GCA and neither are normal bloods. I was treated for GCA aged 54 after normal bloods and biopsy based on symptoms alone and the fact that I responded to 60mg Pred in hours.
When you say you can’t take steroids because you are allergic, what do you mean?
I did see a neurologist too who suggested an MRI (without contrast at my request) so I am considering this but since it wasn't to look for GCA I needed to think about it. He did not want to do a PET scan (my preference). The first rheumatologist referred me to the neurologist. Working theory is TMJ or migraine but it's a stretch.
I agree 45 is not too young for GCA, but it does seem to count against me.
With steroids, I suffer from so called "fluoroquinolone toxicity" (I reacted badly to an antibiotic, Levofloxacin, 6 years ago) which means a single steroid dose could have terrible consequences to my body. Tear tendons, damage joints, neuropathy etc.
I was crippled by Fluoroquinalone effect on my tendons for 18 months some years ago (aged 41) with lingering tendency for tendinopathy for years. By the time my dog’s vet diagnosed me I had already had 6 x 10 day course of these antibiotics over 6 months. I was in a state. I had the usual and ineffective Achilles stretch exercises and it got incompletely better over time. My sister, who was hobbling after just a week of them, was treated with a GTN patch (for angina usually) applied to the area with astounding results.
When GCA arrived (aged 54) there was no talk of steroids always being contraindicated, only not to take at the same time as FQ’s. An online search seems to say as much (.gov guidelines below) so I’d be interested in any sources you have that say, no steroids not ever. When faced with going blind, aneurysm and stroke there was no question that steroids should be taken. There is no other treatment that comprehensively keeps GCA and PMR inflammation at bay. My tendons are now the best they’ve ever been after running into trouble later on in my Pred journey on low doses having started on 60mg. My recovery I put down to finally getting proper insoles to stop the Achilles abuse from my lifelong but subtle gait style. I suspect Pred, deconditioning and exercise plus uncorrected feet caused the issue. PMR that often runs with GCA also affects tendons. However, given the right approach for the first time in decades my tendons have become normal and I’m nearly 62.
I’m saying all this in case you are faced with not much choice.
I too had the quinolone effect after only a couple of days - looked it up and headed for my slightly daffy GP at the time. "I've heard of it but never seen it ..." Since getting custom-made insoles it appears to have disappeared. It took a day with OH and it stopped immediately when I stopped the quinolone and asked the GP for something else.
I did find one statement that a "history" of using both quinolones and steroids is significant, not just concurrent use. However - like you, if the choice is a possible wheelchair or being blind - I know which risk I'd accept.
Thanks for sharing this, I had no idea you'd been affected too. Also considered "rare". Your experience seems quite typical of some others I know, Achilles tendon impact then slow semi-resolution over 1-2 years.
I was severely affected - neuropathy, fatigue, tendon destruction and joint wastage. Chemical and food sensitivities. It's left me housebound and disabled, requiring care, since age 39.
Re steroids I am going on many accounts of other who took steroids. Some tolerate, but many don't. It's considered a firm no-no. My own mother, who was floxed eight years before me, had a steroid joint injection and relapsed.
However it's reassuring that you tolerated the steroids despite your experience with quinolone toxicity, thanks for sharing that.
I saw another rheumatologist for a second opinion, but he also said nothing more could be done.
Well he’s wrong - and needs to think outside the box..as stated 45 is not too young, and not everyone has raised markers..plus if he doesn’t consider it’s GCA then he needs to refer you to another specialist to find out what it is!
I know, it's tough. The first rheumatologist did send me to a neurologist but that was to look for other things.
I think my age plus normal bloods plus clear ultrasound is considered enough. He did say he would do ANOTHER ultrasound but it's too far for me to travel.
With steroids, I suffer from so called "fluoroquinolone toxicity" (I reacted badly to an antibiotic, Levofloxacin, 6 years ago) which means a single steroid dose could have terrible consequences to my body. Tear tendons, damage joints, neuropathy etc.
It's a risk I would only contemplate with a diagnosis.
Ahh… can understand your reticence then… but not medically trained so cannot comment [will leave that to others].
However if you have GCA then it’s a risk you may need to take, so let’s hope you don’t. There may be other options in your scenario - but as you say you need a diagnosis first.
Yes, that's right. I feel really stuck - and very unwell in the process. The last few days my symptoms have included nausea and bouts of feeling systemically unwell. I don't know how I can accelerate a diagnosis beyond shopping around expensive consultants
There is tocilizumab which could be used after a positive diagnosis to justify the cost - the clinical studies haven't been done to see if it works on its own because the ethical considerations of offering a drug that is unproven at this stage are enormous - if it didn't work then the subject's sight is at risk. However, it is usually used in tandem with pred which achieves the initial remission and then the tocilizumab allows much faster tapering of pred over a few months rather than years. Half of patients get off pred altogether - half still need some pred because there are at least 3 different mechanisms for the GCA inflammation and tocilizumab only works on one of them.
Like the biopsy, the ultrasound only works if the artery examined is affected and GCA forms what are called skip lesions so there are areas where there is no disease. Where did he do the ultrasound? Only on the temple artery or other places too? And GCA can affect arteries they can't access with u/s or biopsy - the PET-CT would be more informative.
When I was a 'subject' on an ultrasound training day, the delegates scanned my facial, maxillary, temporal, occipital and carotid arteries! I am known to have GCA-LVV and they saw changes in only my carotids.
I had a PET-CT scan at diagnosis and the images were conclusive - all the arteries involved were clearly seen, as well as pockets of PMR inflammation.
For me, they scanned "both temporal arteries, frontal and parietal branches" as well as my armpits and clavicle areas. I asked twice for a PET scan but two consultants didn't feel it was justifiable for me.
Yes, I was hopeful I could go on tocilizumab without steroids. But as you say this is untested and might not work. Perhaps a risk I have to take. I need a diagnosis first, which is proving hard.
I had two ultrasounds, ten days apart. Different technicians. The first tech was highly experienced, head of hospital vascular dept. My temporal arteries, right and left, were checked. And around my armpits and clavicle.
This should be reassuring but I am very unclear on the sensitivity of ultrasound for GCA.
It WILL work if it is GCA - what you can't guarantee is whether it will work quickly enough to be as reliable in reducing inflammation very quickly like pred does when doing the clinical studies - no ethics committee would approve throwing out the safety net. But it will work a darn sight faster than no pred at all.
Studies of ultrasound have concluded it is equivalent to biopsy and should be the firstline diagnostic test,
"Algorithms incorporating combinations of imaging modalities can achieve a 100% sensitivity and specificity for a diagnosis of GCA."
That is good to know, thank you. When I asked the rheumatologist what he would hypothetically give someone with GCA who couldn't take steroids, he said tocilizumab, because it is "fast acting". Presumably faster than other alternatives.
So the sensitivity of ultrasound is about 70%, which is actually quite good. It seems PET and MRI can be used to further rule out GCA.
What would have been more accurate is "it works" - pred works in hours, TCZ probably/possibly takes up to a couple of weeks if the truth were told. Nothing else works except other IL-6 inhibitors, sarilumab for example.
As I replied in another post, my temporal arteries weren’t affected… but the ophthalmic one was, causing sight loss. The probable is the giant cells don’t appear in all arteries, and in those that they do, they grow randomly… difficult little varmints to find sometimes!
This is Jody's mobile. I don't think the landline is still in use. 01932877313. Prof Hughes likes to see people in person for the first appointment then it is by phone. He (unlike some rheumys) acknowledges the potential connection between covid/covid vaccine and GCA/PMR. Your symptoms seem to tick all the GCA boxes. I had raised TAs after the vaccine and was diagnosed a week after. They went back to normal with Pred and have never been back. I would say it is a reasonable hypothesis that the covid effect may be causing more autoimmune conditions in younger people. The only thing is that private consultants are not able to prescribe TCZ. So unless you are in the Chertsey catchment area (I understand from the forum Rod is sometimes able to transfer patients who are to his NHS list) you would need to find an NHS consultant in your area who would prescribe. Good luck to you; please let us know how you get on.
Thank you Viveka, this is so helpful. I have arranged a consult with Prof Hughes, via phone. It's great to know he won't dismiss my covid hypothesis. And that he can't prescribe TCZ. A consultant in my area *would* prescribe TCZ, but I need a diagnosis first. I'm hoping Prof Hughes can help a bit with that.
I assume your platelets/CBC are normal as well? In my case platelets have been a better marker than CRP and ESR during periods with flares. Initially CRP and ESR were elevated as well though
That is all very GCA-ey…. Unfortunately having been there I know exactly what you are going through… and if like me, you will find no painkiller touch it..
I know it’s no help to you, but my GP went off on a completely erroneous track, and then blamed all issues on her wrong diagnosis - only excuse I have for not being more proactive was being totally unaware of GCA.
Do hope you can get into see RH asap.. but would just say if you have any sight disturbances then hotfoot it to A&E/ED pronto..
I worry so much about eyesight and stroke. It's like a sword of damocles hanging over me as I rush to get a diagnosis. Rushing for a month but still at square one.
Back in 1998 my father’s GCA was diagnosed by an ophthalmologist and confirmed when he had a biopsy. Dad was 78 he had daily headaches. The Dr started him on 60mg Prednisone.
Having said that at the beginning of 2020 before covid i had some visual event and as it was the weekend i went straight to the Eye Hospital in Sydney. Following examination and blood tests my ESR was 28 and CRP 90s and knowing the family history the Dr on duty wanted to start me on 60mg Prednisone but i had no other symptomd anf i knew i hsd IBS that week so i chose to wait to see my Opthalmologist on Monday, emergency appointment. My ophthalmologist had the test results from the weekend and following a thorough examination said my case was a classic example of dry eye.
Later that year i was diagnosed with Psoriatic Arthritis and started on Prednisone. Im on a minimal dose now and hoping to come off it soon GW.
So what i think is important is specially if GCR is suspected?? The right specialist can make a diagnosis.
All the best for you to get back to good health soon.
Thanks for describing your experience, and that of your father. It's clear GCA can be difficult to identify and diagnose. I'm hoping I will find a good specialist soon. You're in Sydney? I lived there for 7 years, in the inner west, Glebe and Erksineville. I miss the ocean. Good luck with your health journey.
What made you think it is GCA? Your symptoms are not exclusive to GCA. There is lots of weird side effects of Covid including yours. Given the low range of tests and clear ultrasound I can understand the rheumatologists diagnosis.
I suggest getting a biopsy of your Carotid artery and if this is also clear then I would look for other causes.
It was the only thing that fitted. Particularly when I experienced the jaw pain when chewing, 3-4 days after the left temple, head and scalp pain started.
There is a study linking covid peaks in a UK city to a spikes in GCA cases, occurring 40-45 days later. This also fit neatly.
I have asked for a biopsy but two rheumatologists - and a neurologist - will not give me one, given my clear tests. I have been offered an MRI instead. I will do this, but without gadolinium.
I live in the states and no one could figure out what was wrong with me because I didn’t fit the criteria. My symptoms didn’t measure up to what most people experience but my CRP and SED rate was off the chart. My doctors sent me to Mayo Clinic and the very last test they did was a PET scan that gave me my diagnosis of GCA!
Hi. I'm in the same boat. I had the first time a partial lost of vision and ophtalmologiste laugh at me and told me to get a normal eye exam. Few weeks later i'm back with my normal vision. I had pain and my eyelid look like a ptosis like it droop. The optometrist ask me if i have guillain barre syndrome with the look on the picture. It took around 15 doctors, multiple test and 3 years for a neurologist to tell me it's cause by inflammation. I also have higher crp when flare happen like between 10 and 30 and extra fatigue. But he didn't find what cause it. He send a note to the rhumathologist so still in investigation. There's a lot of disease that can cause similar problem so it can be long. I got check for myasthenia, ms and trigeminal neuralgia, myositis, scleroderma, sjogren, lupus, thyroid disease, etc... all negative except i have inflammation marker. I'm pretty sure i have a kind of vasculitis because of my other symptom elsewhere. I think for them to find it i need to wait to be rock bottom sick. They found the spondyloarthritis and treatment help. Have digestive problem and i'm battling an old stubborn gastroenterologist. And my gp told me he can't help me case to complex and even if they find the problem he's pretty sure there no treatment. Prednisone high dose help but i can just take it in extreme case. Ah and in my case everything start 2 hours after the covid vaccin. I had cough, difficulty breathing, walking... a lot of fun. Good luck in your quest for answer and treatment.
"Prednisone high dose help but i can just take it in extreme case. "
How high? And why?
"my gp told me he can't help me case to complex and even if they find the problem he's pretty sure there no treatment"
What does he mean by "treatment"? There are no cures for autoimmune diseases yet - all they can do is manage the inflammation to relieve the symptoms. THAT is treatment. And you say pred helps.
Many of the people on this forum required high doses of pred to save their sight. Once the initial period of very high dose pred had reduced the accumulated inflammation to a safe level they then tapered the dose to find the lowest effective dose - but that must be done slowly and in a controlled manner, sometimes over many months.
To say nothing can be done is giving up. There is probably another drug that could be substituted - they should be measuring the cytokine levels to identify if there is a biologic that might be suitable.
Hi PMRpro DorsetLady and happy new year! I've been looking into alternative diagnostics, and wondering if either of you had come across "high sensitivity" CRP (hs-CRP)?
Nothing to do with GCA - it is a cardiac-related marker. It is measured using a different technique in patients with normal range CRP and otherwise healthy:
"The Hs-CRP is used as a predictive marker of cardiac disease risk and stroke in otherwise apparently healthy people or individuals with or without risk factors for the development and progression of these disease conditions. The Hs-CRP test measures even low levels of inflammation and indicates the risk of cardiac disease and stroke "
Ah I see. Thanks for clarifying that, I thought it might be a long shot. The paper I shared suggests it might be used to diagnose patients with suspected occult GCA, but it does all seem rather speculative.
Can you give me a link? It is such a hit or miss marker - it shows inflammation. Somewhere. Due to something. And that really is all that can be said. If you have occult GCA - surely that is a risk for stroke? But you can have strokes without GCA.
There are other markers they are beginning to look at but it needs a lot of work to be really sure they are reliable.
There are inconsistencies there though and they are a bit out of date - aspirin is no longer recommended as the risks significantly outweigh any benefits and at 84 there is likely to be considerable cardiovascular impairment which could be the cause of the raised hs-CRP.
There are actually a few other inflammation markers that have been looked at for use in patients on Actemra where the ESR and CRP fall to zero as an effect of the drug so can;t be used to monitor disease status. It is unquestionably the greatest unmet need in the disease, not just GCA but the whole spectrum.
PMRpro DorsetLady just a brief update. I had an MRI/MRA (no contrast) which revealed "normal appearances of the intracranial arteries, with no other intracranial features to suggest arteritis/vasculitis". Not surprising, really - a contrast scan would be better. A repeat ESR/CRP was normal. I'll keep you posted on next steps. Seeing Dr Hughes next week.
PMRpro DorsetLady I can't thank you enough for the recommendation - Dr Hughes was incredibly helpful and knowledgeable. He agreed I need more diagnostic certainty and so I'll do a PET scan and another ultrasound. Given my clear bloods and ultrasound he said my chance of eye involvement is minimal, which is extremely reassuring. He also said GCA is self limiting, so it might eventually resolve without medication. He really knows his stuff, and I think I'm on a good course now. Thanks again for your all your help.
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