struggling with getting a diagnosis GCA

This is my second time around, having initially presented 13 years ago aged 47, with new headache, vascular noises, jaw cramping, which responded well to prednisone…..over nearly 3 years, and then fine for 10 years.

Slightly different this time, as symptoms have responded less well to steroids. The weirdest tongue tingling, and horrible pulse like pounding in my chest. Is this involving the aorta?

Unfortunately as my biopsy was negative, I was discharged from the medical team at the hospital, and told to rapid wean of the steroids, and within 6 days and a 2x5 mg drop, I was at my wits end with lack of sleep due to the appalling chest pounding. I have tried to explain these symptoms to doctors, but I get the impression they think I’m crazy/ anxious etc, although trying to navigate the current NHS systems would cause anxiety in the most stoic person.

[DorsetLady PMRGCAuk volunteer]

Hi,

Maybe have a look at this - sounds as if it it might be extra cranial GCA or LVV (large vessel vasculitis) - and then discuss with doctors - maybe start with GP if that’s easiest, but certainly needs further investigation-

academic.oup.com/rheumatolo...

Picture shows overlap of diseases, and comes from article.

Please keep us informed…and fingers crossed you get the help you need

Overlap

[Hidden in reply to DorsetLady]

Thanks for the reference……really informative, and added to my arsenal. It helps to know that I’m not going mad!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

well if you are going mad..much like the rest of us..so you’re in good company 😂🤣

[SnazzyD]

Have they done anything like a CT, PET scan or even a chest x-ray?

[Hidden in reply to SnazzyD]

bloods, ecg and Biopsy……CRP dropped fron 30 to 3 on the steroids, and discharged saying it’s not GCA as the biopsy was normal.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Rubbish...as we know on here, totally agree with PMRpro's comments further down....

Although it may NOT be cranial GCA, although not convinced having been there, blah, blah, blah, but certainly could be extra cranial GCA, or indeed both, which is why sent link earlier...

Keep us informed please...

[Hidden in reply to DorsetLady]

Thanks, I will let you know when anything happens. At least the last GP I spoke to was happy to generate referrals.

[PMRpro Ambassador]

Where in the UK are you? What other symptoms besides the tongue sensations have you got?

[Hidden in reply to PMRpro]

Cambridgeshire.

Head pain and patchy tenderness, episodic blurred vision, tongue tingling, starting to get jaw stiffness, weight loss, fatigue, bruits at temporal artery, and really disturbed by thumping in my chest and neck. I’m hoping these calm a little having gone back up to 60 mg.

I’ve been dumped in limbo, as I was told the local rheum dept only accept refs with a +ve biopsy! I have generated a private consult, hopefully next month and asked for a NHSref as well, but that may get rejected. (I worked in the NHS, with orthopaedics and rheumatology for over 25 years, and now know how frustrating it is.)

[PMRpro Ambassador in reply to Hidden]

Sheer ignorance of GCA - a negative biopsy doesn't mean GCA is ruled out, it means they didn't find what they were looking for: giant cells. There are several reasons for that - not least that the temporal artery isn't always affected. GCA also manifests as skip lesions - there are areas with the giant cells and areas without and it is quite easy to miss them. They are less likely to be seen once a patient is on pred.

I do hope that whoever you see privately is more knowledgeable - not from that hospital trust I hope! The symptoms you describe are all typical of GCA, you have a history of GCA - and of atypical GCA, a negative biopsy isn't enough to convince me.

[123-go in reply to Hidden]

I know the 'dumped in limbo' scenario and it's frustrating and maddening and everything in between. If/when you feel up to it I would definitely recommend writing to the department re-iterating your symptoms and your dissatisfaction - and the ensuing effect on your mental health. That's your choice, of course, and hopefully the next person you see will be more professional and take your symptoms seriously. I wish you well.

Please let us know of any developments.

[SnazzyD in reply to Hidden]

Goodness, is that Addenbrookes?

[Hidden in reply to SnazzyD]

no, Hinchingbrooke! Even more frustrating when I’ve worked closely with the rheumatology dept from 1991-2019, and know the consultants well. I thought they were better then this…..let’s see if the ref from the GP gets accepted or rejected, and how long the wait is.

[SnazzyD in reply to Hidden]

Don’t know Hinchingbrooke well, only for study days. I think it depends on what they are treating. All my main contact with them was seeing patients being treated with rheumatoid arthritis which seemed pretty reliable. Then becoming diagnosed with GCA, it felt like a desert for consistent and up to date knowledge. I’ve heard so much cobblers it’s very frustrating and being seen by different doctors nearly every time, the lack of consensus meant I had to learn a lot very fast. It’s upsetting to have to fight isn’t it? I like to ask them why they have ruled out LVV given your symptom history and what risk did they see if they refuse to investigate.

[Hidden in reply to SnazzyD]

I don’t think LVV has even crossed their minds, and I’ve been made to feel that it’s anxiety, and so currently I’m keeping stum till I see someone who might have an open mind…..and just hoping that it’s not too long a wait

[PMRpro Ambassador in reply to Hidden]

I had the "all in your head" insinuations from a GP with PMR at 51. Until I looked him in the eye and told him he could stop that nonsense! We were fairly good friends ... Then got the evasion action by a rheumatologist in the UK - but no questions from the 2 rheumies I saw/see here. And whatever it is, it causes PMR symptoms, had a few GCA red flags but they disappeared and it responds well to TCZ so it must be IL-6 mediated ...

[Hidden in reply to PMRpro]

I’m practicing trying to stay civil and rational…….rather that than bat shit crazy due to lack of sleep!

I’m new to some of the terms used…TCZ and IL-6 mediated?

[PMRpro Ambassador in reply to Hidden]

IL-6 is the inflammatory cytokine that underlies most of the inflammation in PMR and GCA, there are a couple of secondary players. TCZ is tocilizumab, brand name Actemra. a monoclonal antibody biologic drug that works on IL-6 and stops its production.

[Sophiestree]

Hi, when you say this is the 2nd time around, did you have GCA before?

I totally relate to the chest pounding. Pre diagnosis I often had to just lie on my bed and wait for it to subside. I had every scan going and was finally diagnosed with LVV via a PET CT.

I can hear your frustration, especially as you know a lot of these people. To ignore your sight issues is a big worry too, and they should not be ignoring your weight loss either.

Can you go to a different hospital? Via A&E presenting with the vision issues, scalp tenderness and jaw issues - they are pretty classic symptoms together with your past history?

[Hidden in reply to Sophiestree]

Yes, I had an episode in 2009; while I didn’t have raised bloods or a positive TAB, and was under the age of 50, I was still symptomatic enough to be managed as GCA. ( By the medical team….not rheumatology.) The steroids worked instantly on the symptoms, with a little relapse on tapering at some of the levels over the nearly 3 years .

This time is so different, not helping with the NHS feeling like playing snakes and ladders but without the ladders!

I did consider going to a different hospital. Isn’t the definition of insanity doing the same thing and expecting a different outcome! I’m hoping to get to see a rheumatologist eventually, private and/or NHS.

How long did it take for you to get diagnosed?