Other options for diagnosing GCA

[jwb43]

Is there any other way to diagnose GCA of than doing temporal artery biopsy?

[SheffieldJane]

Like PMR it is probably clinical observation of symptoms and medical history mostly. Blood tests may show high levels of inflammation. As far as I can gather the biopsy just tells you whether GCA is present in that particular artery, it cannot give you a definitive all clear. My Rheumatologist sometimes feels my temples ( bless) so maybe the arteries can look and feel lumpy. For the scientific version you will have to wait for my learned colleagues.

[DorsetLady PMRGCAuk volunteer]

Hi,

As SJane says symptoms are usually the key, after other more common illnesses have been ruled out. Raised ESR and CRP markers are another indication although some people never have raised markers, and even if they are raised it's just proves you have a lot of inflammation in your body which could also be attributed to other diseases.

The biopsy is still classed as the gold standard in diagnosis by some clinicians, but as Jane also says it may prove you have it, but if you get a negative result that doesn't prove you don't have it!

Some hospitals are now using an ultrasound procedure to diagnose GCA, but I think they are few and far between at present.

There are more dramatic ways of proving diagnosis, but believe you me you don't want to go down that route!

[Woodiesmum in reply to DorsetLady]

I have just had us Doppler scan and I have defo got GCA I am concerned as I have been on steriods since last year and it's made no difference so they have put them i to 40 so hopefully I will get better results x

One doctor couldn't understand why I still got loads of symptoms still from been on 60 mg pred and they reduced but I got worse so now I k ow why x

Hope they do they s an nation wide now xx I had a biopsy and it didn't show anything up x

[DorsetLady PMRGCAuk volunteer in reply to Woodiesmum]

Hi Woodiesmum,

You've probably had GCA all along and it's not been diagnosed as such so you reduced too quickly to keep the symptoms under control. As we're always saying the biopsy can be very hit and miss which is why we wonder why the doctors usually rely on it - guess up until now it's all they've had to confirm. As you hopefully as the scanning system becomes more widespread, both in US and U.K. patients will get a definitive diagnosis much quicker and more importantly, more accurately.

Hopefully now you're back at 40mg things will improve for you - do hope do.

Take care.

[PMRpro Ambassador]

There are increasing numbers of hospitals which have access to the ultrasound technique - it was compared with the TAB (temporal artery biopsy) in the TABUL study. It shows a halo effect around the affected artery.

GCA in other arteries (it doesn't just affect the head) can be seen with ultrasound of the brachial artery. They also will show up on a PET-CT scan where arteries in the trunk will "light up" with the contrast material. However, this is badly compromised once the patient is on high dose pred so needs to be done either very quickly or after reducing the dose to below 10mg - which isn't always a good idea. But this doesn't show whether it is specifically GCA (giant cells) or another form of vasculitis causing the inflammation. Only biopsy can show the giant cells.

[jwb43 in reply to PMRpro]

Thank you for your replies I'm not taking any prednisone so maybe these tests would work for me. I just know if they cut into my artery that that area is never going to heal correctly based on my current health condition.

[alexgranma13 in reply to jwb43]

Hello. I live in Newcastle . After blood test ( esr 80) my gp arranged a scan the next morning at the Freeman Hospital . I actually saw the results on the screen showing the swelling /inflammation. That was 5 years ago. I would hope more hospitals wld have moved on to scanning rather than biopsy. Ask there may be the facility near to you. Good luck 👍

[jwb43 in reply to alexgranma13]

Thank you I have an appointment with my GP this morning and with my rheumatologist this afternoon so hopefully one of them can come up with something

[KCRoyals]

Dear D/L,

"There are more dramatic ways of proving diagnosis, but believe you me you don't want to go down that route!"

Please tell!

[PMRpro Ambassador in reply to KCRoyals]

Visual loss is often the point where the doctors learn what the patient has been coming to see them for for the last however long.

[DorsetLady PMRGCAuk volunteer in reply to KCRoyals]

As PMRpro says - loss of vision, partial or complete.

Unfortunately I was undiagnosed for 18 months, and my GCA was only diagnosed when I rocked up to A&E having lost sight in right eye (happened over a period of 4 days after weeks of headaches).

My GP had gone completely down the wrong road with diagnosis and didn't join up the dots re GCA, so the diagnosis came as a complete shock to both me and her alike!

There followed more weeks of uncertainly until specialists were happy other eye saved!

As I said... not a route anyone wants to follow!

But I never do things the easy way!

[jwb43 in reply to DorsetLady]

Thank you for that insight I sure hope it's not GCA because I'm sure that high a dose of prednisone would kill me. I took 15 mg for a few days and could not stand it. Had severe chest pains heart palpitations insomnia sweating nausea confusion anxiety restlessness it just was an unlivable situation. But nobody wants to lose their sight either

[DorsetLady PMRGCAuk volunteer in reply to jwb43]

No, I didn't have any choice with starting dose! Or whether to take it or not!

But if you're diagnosed in a timely matter it's usually 40mg as compared to 80mg!

And whatever the dose, your body does adjust to it. I think I was in shock for the first few months anyway so maybe didn't react to the Pred as some - plus I have a constitution like an ox ( according to my late hubby anyway!)

[KCRoyals]

Hi friends, wonder what would be the criteria for getting a scan for GCA. As D/L says it can go undiagnosed for quite a while.

[DorsetLady PMRGCAuk volunteer in reply to KCRoyals]

Usual symptoms - stiffness, pain in shoulders, fatigue, maybe raised CRP/ESR levels (similar to PMR) aligned with consistent headaches, pains in jaw, trouble eating, swallowing etc, sometimes enlarged and/or tender temporal arteries ( although I never did).

Trouble is, not everybody gets all symptoms, and they can be confused with other illnesses (that's what happened to me).

If you already have been diagnosed with PMR, you may also get GCA if not treated with sufficient Pred. Not necessarily, and sometime you get GCA, but not PMR.

I you have reason to believe you have GCA, then you should see Rheumy - he may suggest a Scan if hospital has facility, but not all do, otherwise it's a biopsy. Unless he is persuaded you do have GCA by your symptoms only. Probably depends how experienced he is, and how sure he is of diagnosis without further tests.

[jwb43 in reply to DorsetLady]

I have had all the symptoms described above but they seem to come and go blurred vision at times scalp pain at times jaw pain pretty constant Temple pain a lot recently and the usual pain and stiffness all over so I have my appointment this morning and this afternoon hopefully I'll get a scan

[DorsetLady PMRGCAuk volunteer in reply to jwb43]

Please let us know outcome.

[jwb43 in reply to DorsetLady]

MRI & MRA of temples and head and eye exam all say I do not have any indication of GCA. Hope they are right. Symptoms have subsided in the temples and head.

[DorsetLady PMRGCAuk volunteer in reply to jwb43]

Good about symptoms....and scans. But have they come up with anything else?

[jwb43 in reply to DorsetLady]

No they have not come up with anything else. You're going to try immunoglobulin infusions. Because I can't take prednisones due to the extreme side effects. But my condition is affected quite a bit by other pain relievers so I'm pretty much confined walking short distances and sitting for short period's of time because of the pain caused in my hips by sitting. It's been four years now and they're still not sure what it is.

[DorsetLady PMRGCAuk volunteer in reply to jwb43]

Sorry to hear that you've had these problems for so long.

The medical people have obviously done all the "normal" tests to rule illnesses out, but after that amount of time, you must be getting very frustrated with not getting an answer.

I do hope you get some relief soon.

[jwb43 in reply to DorsetLady]

Thank you. Yes it is very frustrating. My blood work is normal. But somehow this muscle pain is continuing to spread to every muscle in my body.I wish there was a way to know what is the final outcome of untreated PMR?

[DorsetLady PMRGCAuk volunteer in reply to jwb43]

Hi,

Untreated PMR?

PMRpro had untreated PMR for 5 years which resulted in her being virtually bed bound I believe, but I'm sure she will confirm Idc.

It can also lead to GCA, as you know, but as you've been tested for that, then that may not be the way yours is going - if it is in fact PMR.

The one way to know if it's PMR us to take Pred, but if you say you had a bad reaction to that, then I don't know what else to suggest.

I guess some people do actually get through PMR without it being diagnosed or treated and it does usually go into remission of its own accord.

But you obviously do need further investigation.

[PMRpro Ambassador in reply to DorsetLady]

No, wasn't me that was bed-bound, it was Celtic. She had undiagnosed PMR, could barely get out of bed and needed ambulance transport to get to hospital appointments. That lasted about a year I think and then it disappeared - only to return some time later as GCA. Which still wasn't recognised - until her pharmacist suggested GCA.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Hi,

Yes I knew Celtic was, but I thought you weren't far off it either!

Not very happy at moment, through inaction (?) of GP with regard to arthritic left knee have now developed trochanteric bursitis (or the more general term, greater trochanteric pain syndrome, now preferred) in right hip! Ouch!! Seen physio.

[PMRpro Ambassador in reply to DorsetLady]

Ouch indeed - you have my sympathy!

No, it hurt a lot and I couldn't walk far because of the hip bursitis (I'll give them pain syndrome!!!! Just doesn't express the agony does it?) but I could drive and get out that way until the silly stroke lead decided I might have epilepsy so shouldn't drive. She needed to brush up on her DVLA info - but it was me that suffered of course.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

No, not exactly!

And what annoys me is that my GP has been very reticent to refer me to Orthopaedic Dept (has been dithering for best part of 18 months because I think he didn't realise it was as bad as I kept telling him!) - so it's all a bit unnecessary.

Perhaps I should have been more forceful, considering my past experience with GPs. But I thought this was more switched on !!

[PMRpro Ambassador in reply to KCRoyals]

Availability is the basic criterion! If they have they will almost certainly do it.

[Woodiesmum]

Yes I had to be on 10mg pred x

No wonder the doctor was confused as to why I still had all my symptoms x I am back at rheumy on Thursday so will update you xx