Temporal Arteries

[Berylholley]

How can you tell if it's GCA? or Vasculitis?

[SheffieldJane]

As I understand it, all these diseases are forms of Vasculitis. It just depends where in your body you have it. My neck was scanned for Aortic Vasculitis. My PMR was diagnosed principally on the symptom picture, as is GCA,coupled with inflammation that shows up in most patients blood test results.

PMRPro explains this well.

[Berylholley in reply to SheffieldJane]

Thanks for reply. I phoned my Rheumatologist yesterday as I had sharp pains at intervals running up my right temple. Have had them before but these were stronger. Have only seen him once and told him I had jaw stiffness which is now better after being put on 40mg prednisolone. Fot some reason he says I don't have GCA. I am waiting for cataract surgery. I upped my dose by 1mg last night had some of the pains in the night but OK at the moment. Am now down to 12.5/11.5mg.

[jinasc in reply to Berylholley]

Dorset Lady and Sheffield Jane are correct, GCA is part of the larger family of Vasculitis, which includes Synogrens, Takayasu's etc

You have the classic symptoms GCA and I would be downloading, reading and taking to your GP (GPs are not issued with those guidelines, the BSR issue them to their Consultants. The current guidelines (international new ones awaiting final clearance) have not been cleared by NICE for issue to GPs. However your GP does have access via the internet.

Go to this link BSR Diagnosis and Treatment of GCA:

pmr-gca-northeast.org.uk/as...

I would have no trust in that particular Rheumatologist and I would be asking on what is he basing the non-diagnosis of GCA and if so, what it is.

And I would not be taking 12.5mg either at this stage. It is not enough for GCA at this time.

You need an appointment with your GP pronto and if the symptoms get worse over the weekend ..................off to A&E pronto and, if necessary ask to see the Consultant in Charge of A&E and tell him exactly what is going on.

You have the classic symptoms and I would be downloading, reading and taking to your GP (GPs are not issued with those guidelines, the BSR issue them to their Consultants. The current guidelines (international new ones awaiting final clearance) have not been cleared by NICE for issue to GPs. However your GP does have access via the internet.

I do not want to frighten you but I do want you to be pro-active as it your sight that is at stake here and partial or total loss, once it is gone, it is gone.

If we are wrong, so what - that happens now and again.

I apologise for the length.

[Berylholley in reply to jinasc]

When I phoned him I asked when I would be getting an appointment with him and he referred to my last appointment which was on 21st June and he said he woulld be sending me one so I will ask that. I will read and print out the link but doubt if he will read it!

[DorsetLady PMRGCAuk volunteer]

Hi,

According to the experts -

GCA is classified as a large-vessel vasculitis but typically also involves medium and small arteries, particularly the superficial temporal arteries—hence the term temporal arteritis. In addition, GCA most commonly affects the ophthalmic, occipital, vertebral, posterior ciliary, and proximal vertebral arteries. Medium- and large-sized vessels that may be involved include the aorta and the carotid, subclavian, and iliac artery.

[Berylholley in reply to DorsetLady]

Thanks for that. I think that my apply, particularly concerned about carotid and aorta arteries but as my reply above says my Rheumatologist is vehement that I don't have GCA. I am trying to reduce from 12.5mg by your slow method.

[DorsetLady PMRGCAuk volunteer in reply to Berylholley]

Hi Beryl,

Not sure of your full history, when diagnosed, what symptoms pre diagnosis, start dose, reductions, hiccups etc

There seems to be confusion in Rheumy’s mind as to whether it’s GCA or PMR or possibly both. If you started at 40mg (if my reading is correct) then he obviously thought it might be GCA - wonder why he's now adamant it’s not.

[Berylholley in reply to DorsetLady]

Before saying I had not got GCA he said I had not got PMR, the only thing is I did not have the blood markers. I argued with him that I had arms shoulders weakened and carotid artery near neck was very sore couldn't turn over in bed or get out of bed and could hardly lift teapot. I am concerned about carotid as previously had pulsatile tinitus and Sjogren's suspected but no blood markers.

[Berylholley in reply to DorsetLady]

It was the doctor who prescribed 40mg and they are both urging me to reduce quickly. I want to tell you that last night I added a 1mg tablet and had some wakefulness but this morning took 12.5mg 9 hours ago and have not had any more temple pains yet! Now do I need to keep on this dose?

[DorsetLady PMRGCAuk volunteer in reply to Berylholley]

Well I’d be inclined to for a few days, but you do really need to get to the bottom of what’s actually wrong with you. I’m sure you must be so confused. Just because you haven’t got raised markers, doesn’t mean you don’t have GCA or PMR, up to 20% of patients don’t. The key thing is always the symptoms!

If you have the willpower I think a second opinion is called for, ditch your current Rheumatologist.

jinasc is correct your sight could be at risk, so you need to get back to GP and push for clarification.

Good luck.

[PMRpro Ambassador in reply to DorsetLady]

Yes - I agree, definitely a second opinion. He cannot know categorically you don't have GCA, the only thing he could be sure of is that you DO have GCA if you had a positive biopsy result. Neither normal blood markers nor a negative biopsy mean anything. Symptoms rule - it is a CLINICAL diagnosis, on the basis of symptoms possibly supported by blood tests but they are a bonus.

[Berylholley in reply to PMRpro]

I will wait to see what he comes up with, the thing is I have not as yet had any headaches, just the sharp pain. Do I need a Rheumatologist??

[PMRpro Ambassador in reply to Berylholley]

You could speak to your GP and ask if they can think of other reasons for a sharp pain that seems to respond to pred.

[Berylholley in reply to PMRpro]

Will definitely keep that in mind.

[Berylholley in reply to DorsetLady]

Thank you for your advice, it has helped enormously.

[gifford7]

As others have mentioned, GCA is a form of vasculitis. A diagnosis of GCA tends to be supported by measuring 2 inflammatory blood factors, CRP & ESR. If normal. they tend to reduce the likelihood of GCA. What are your CRP & ESR?

[Berylholley in reply to gifford7]

I did not have the blood markers. So refused to go for biopsy as I have read it is not very reliable.

[Mikb in reply to Berylholley]

I did not have the blood markers either. Ultrasound came back fine. CT and MRI came back fine. All the time they were treating me because they were sure I had GCA. Finally a biopsy proved I did. I was fortunate they believed that symptoms trumped tests.

[Mikb in reply to Mikb]

My story:

jamanetwork.com/journals/ja...

[PMRpro Ambassador in reply to Mikb]

"with concern for GCA she was prescribed 5mg pred daily for 5 days"

I'm speechless...

[Mikb in reply to PMRpro]

That wasn't how it happened. I was prescribed 5 mgs pred at a walk in clinic when they thought I had a sinus infection that antibiotics hadn't touched. Think they took a few liberties to get story down to one page for submission......

[PMRpro Ambassador in reply to Mikb]

OK, fair enough (well, not fair enough, but you know what I mean!)

[Berylholley in reply to Mikb]

Thank you for being so thoughtful.

[gifford7 in reply to Berylholley]

Here is a link indicating 4% of patients with normal CRP ESR were diagnosed with GCA.

Biopsy advised.

ncbi.nlm.nih.gov/pmc/articl...

"CONCLUSIONS

In this study, CRP was a more sensitive marker than ESR for GCA among subjects undergoing TAB. The combination of elevated ESR and CRP provided better specificity than either test alone and was associated with greater odds of a positive TAB. Among GCA patients with a positive biopsy, normal ESR and CRP was observed in 4% of cases. These patients tended to have an overall muted inflammatory response but more frequently had PMR symptoms. Our findings highlight that absence of a systemic inflammatory response as reflected in the currently routinely used ESR and CRP does not exclude GCA. TAB should be pursued in all patients where clinical suspicion of GCA is high. While ESR and CRP are often helpful for the diagnosis of GCA, they are nonspecific and better diagnostic markers are needed."

[prunus in reply to Berylholley]

I had the biopsy about five years ago which confirmed my GCA but I would not recommend it. There is now a non invasive scan available - have you enquired about this?

[Berylholley in reply to prunus]

Sorry I have not replied before but seeing your post reminded me that I may have similar problems. I was diagnosed this May with PMR, and as I had no blood markers and didn't want to have a biopsy was prescribed 40mg prednisolone which cured the jaw problem and eliminated my PMR pain overnight. 12 days later on reducing down to 30mg I developed the most painful lower back muscles and spine pain. To cut a long story short I was reducing to 12.5mg and have had the same thing again but this time it has affected my inner abdomen organs do you think it could have anything to do with the fat we put on as I have not put it on on the usual way I.e. it doesn't show but my abdomen is very hard. Also having slight temple shooting pains but no headache.

[prunus in reply to Berylholley]

Sorry but I know nothing about this.

[jinasc in reply to gifford7]

gifford7

I am sorry to say that whilst ESR and CPR can be very useful and raised, quite a few people with PMR and/or GCA never have raised markers.

ESR and CRP are indicators something is wrong.

I had GCA diagnosed and treated, was down to around 20 and then CRP hit the roof. GP worried and forgot he had diagnosed me with a kidney infection (eyes) on the Monday when I had the blood test done. Then when that result came in, he clean forgot about the infection and rang to tell me to up the pred. I reminded him and we had a good laugh. I had a brilliant GP and Consultant both now retired.

[SheffieldJane]

The trouble with blood test results when you have been on steroid treatment is that they are likely to appear normal and are therefore useless as a diagnostic tool. I would be inclined to go to hospital as the consequences are too great if you delay. It is what I would do.

[Canygirl61]

Hi Berylholley,

I’ve had temporal pain and tenderness for probably two years, which my rheumatologist suspected might be GCA, though my ESR (Sedimentation Rate) wasn’t elevated. Nonetheless he referred me for a temporal biopsy, then changed his mind, and sent me for temporal ultrasound, which was negative. His original suspicion was Sjögrens, but my lip biopsy (despite showing chronic inflammation) was negative for Sjögrens. After scans, MRIs, spinal tap, bone marrow biopsy, labs... I am diagnosed with Wegeners (GPA), mostly because of a consistently elevated c-ANCA. My specialist (Rheumatologist specializing in vasculitis) said that the Wegeners can attack my temporal arteries and mimic GCA. I had my first round of Rituxan yesterday and scheduled for three more (1x per week). I literally have been living with head pain (including facial and behind my eyes) for at least two years— it’s been so long, it’s difficult to keep it all straight. It seems many autoimmune symptoms crossover the many varied autoimmune diseases. Hopefully you find answers. I’m hoping the Rituxan works.

Best,

Claire

[Berylholley in reply to Canygirl61]

Thank you for replying it is such a complicated disease and at least you've got a decent Rhumy so hopefully he will be able to help you. I think mine is a mixture of autoimmyne diseases as I am now 84 I can remember having the symptoms on several previous occasions in the past.