Determining if you have GCA

[Rickgrey]

I just joined HealthUnlocked yesterday. Appreciated people responding to my posts and have found reading and relating to the stories shared in this group helpful.

Very frustrating that there isn't a definitive way of determining if you have GCA. Currently on prednisone and it has brought my sed and crp bloodtests down to normal. This being the case should I still be having GCA type symptoms? Was hoping maybe this would indicate that the temple and eye aches and minor scalp sensitivity was not GCA.

[DorsetLady PMRGCAuk volunteer]

It is frustrating not getting a definite diagnosis - but as explained yesterday, it’s not an exact science like some diseases, but symptoms are the key. If there is no other logical explanation for them being something else then GCA has to be major consideration [until proven otherwise].

In reply to your ongoing scalp issues, as I said yesterday -

Personal opinion-you need to go up to at least previous dose, maybe more and contact doctors to advise them of return of symptoms.

Early days with GCA, so flares are very likely and they need to be addressed promptly by doctors.

Please let us know what advice you get from medical team.

And yes your blood markers may have returned to ‘normal’ but that doesn’t mean it isn’t GCA…although it’s not always east to convince some doctors of that. Just shows the inflammation cause by your underlying illness [whether GCA or not] is being controlled at the moment.. but you still have the root cause chugging along, so that needs to be identified.

Being on higher doses of Pred whilst that is still in progress [although frustrating and not particularly pleasant] is better than not being on enough and risking sight…

[piglette]

They reckon that a GP either misdiagnoses or hasn’t a clue in around forty per cent of patients on their first visit. If people come back they assume they got it wrong the first time. If they don’t come back the patient probably got better anyway.

[PMRpro Ambassador]

There IS a definitive test - when it is positive. It's just being negative doesn't 100% mean it isn't GCA. And similar situations crop up a lot in medicine. Sometimes there just isn't an answer or cure.

[Rickgrey in reply to PMRpro]

Yes I had the temporal biopsy done and it came back negative. Was on 60mg prednisone at the time which may have influenced the result. So now it seems to be a bit of a guessing game.

[PMRpro Ambassador in reply to Rickgrey]

Now it is a clinical diagnosis - based on symptoms and to some extent response to pred. And if it looks likely to be GCA - then it is treated as GCA,

[spoof99 in reply to PMRpro]

I think thats where I am too, taper the Pred and if the symptoms return you have GCA if they don`t then you don`t have it....

[PMRpro Ambassador in reply to spoof99]

In the short term probably. But GCA is better at going into remission than PMR really.

[spoof99 in reply to PMRpro]

I believe one of the reasons my ruumy is on the fence about actually saying yes it`s GCA is how she will treat it, she mentioned in our intial meeting that there are other treatment options that are expensive but there are government and compasionate programs available to cover costs...

[PMRpro Ambassador in reply to spoof99]

There is Actemra, a biologic. But you start with pred - and even Actemra isn't 100% successful without pred. It works for one mechanism of creating inflammation but there can be at least 3 involved and Actemra doesn't have any effect on the others. About half of patients may get off pred altogether but you have to continue injecting the Actemra. And the other half require pred ongoing, though at a much lower dose.

Though why she should be on the fence about whether it is GCA doesn't seem too logical!!

[spoof99 in reply to PMRpro]

That is the med she mentioned, and I agree it`s almost like the cost of the Actemra is coming out of her pocket or budget, she does not seem to put much weight in the other 2 doctors opinion...she said as much in our last meeting "oh they tend to look at symptoms and bloodtests only"

[PMRpro Ambassador in reply to spoof99]

Aye - well I like the concept of symptoms being taken into consideration! And frankly - what else is there besides symptoms and bloods????

[spoof99 in reply to PMRpro]

It`s like she needs confirmation from the ultrasound or biopsy which I understand but to dismiss the other things seems odd, everytime I ask her about the issues I am having with legs she dismisses it has having nothing to do with GCA and its probably something else...again odd given my first symptom was mild leg and arm discomfort that in a few days turned into something that almost had me bed ridden and then a fever of 104 and the the double and blured vision...

[PMRpro Ambassador in reply to spoof99]

Sounds to me as if it could well have been PMR as your presenting symptoms and then it progressed. Some countries require proof positive before funding Actemra but that isn't always possible. Has she mentioned a PET-CT scan?

What are your problems with your legs?

[spoof99 in reply to PMRpro]

I believe that is the scan that is scheduled for May 20 I tried to get it moved up but no luck, I am on the cancellation list.

My legs feel heavy and a little awkward and they get very tired if I stand too long, walking up stairs is very very difficult especially if for example i have a bag of groceries and I have low energy. I have strength in my legs they seem strong I could probably push a hole in the wall if I tried and I do still peddle on the staionary bike....I have shower and I am exhausted and need to sit down I take the dog for a short walk and I need to sit down. As I am typing this I feel 100% normal no pain or discomfort it`s when I get up and start moving around that I feel tiredness.

With regards to the symptoms the intial leg and arm pain was somewhat controlled with tylenol...I never had any scalp issues or jaw issues...

[PMRpro Ambassador in reply to spoof99]

Has the blood flow in your legs been checked? Pulses at your ankles for example?

[spoof99 in reply to PMRpro]

No it has not...I plan to talk to my GP about this next week.

[spoof99]

I am in the same boat, Neurologist says GCA, Neuro ophthalmologist says GCA, Ruumy is not convinced...negative scan and biopsy....now we are tapering Pred until we start to see if symptoms of GCA come back ....I am currently 40mg of pred down from 60.

[HeronNS in reply to spoof99]

I'd trust the ophthalmologist. Unwise to continue taper if symptoms re emerge. Best of luck.

[spoof99 in reply to HeronNS]

I`m with you...I will continue the taper with extreme caution I am hoping that if the symptoms do come back they will follow the same sequence as the last time.

[HeronNS in reply to spoof99]

Fingers crossed they don't come back. 🍀

[spoof99 in reply to HeronNS]

Indeed then we can move on and try and figure out what is wrong with me, whether it be a cardiac issue or some other artery issue.