GCA

[Akino]

This website has some very detailed information about GCA and possible vision loss.

The arteritic form (GCA) of Anterior Ischemic Optic Neuropathy (AION) is really dangerous.

lowvision.org/ischemic_opti...

[JanetRosslyn]

Beginning of paragraph four... "GCA is a dangerous disease that can be fatal" ??? Really? I've never read that anywhere else. I was scared before, but now I'm REALLY scared. I don't always believe everything I read, but wonder if this is right? I don't have GCA myself, but my GP regularly reminds me of the warning signs to look out for.

[Akino in reply to JanetRosslyn]

And so is Prednison. It is very scary and somehow it's a wake-up call for me. I have blurry vision almost every day for hours and I know I'm doing too much, I need to slow down. I have to. I have temple ache, stiff jaw, sometimes hearing problems and slight headache, sometimes on both sides almost every day and I'm on 60 mg for five weeks now.

And my coughing symptoms come and go and maybe the thoracic artery is involved, and maybe there is the danger of an aneurysm? I think I'll see my GP and talk about all this. I want it checked, but I have to do less. And I'll have my eyes checked too.

Did you read about the eye exam, what the Ophthalmologist should look for at emedicin.medscape website?

Here is the link, but you probably have to register: emedicine.medscape.com/arti...

PMRPro gave input regarding medscape and it's very, very useful.

As I'm still very new to all of this I have difficulties to accept the severity of GCA. And like you I don't believe everything. BUT, from now on I pay more attention.

This article is definitely an eye-opener and I hope many in this forum have a chance to read it.

We're the only one who can change things. I hope you'll never get it.

Take care, Monika

[Celtic PMRGCAuk volunteer]

Please be careful what you read, folks, and, importantly, how you interpret it. Yes, GCA, is a serious condition that can lead to serious consequences.........if left untreated! With prompt treatment and the correct care and monitoring, GCA can and does go into remission as many of us posting on this forum and others are testament to.

Importantly, diagnosis and treatment should be swift, and there is now a fast-track system in place for GPs to refer patients straight to a consultant if they suspect GCA. Very high dose treatment with steroids should be initiated immediately to damp down the inflammation. A temporal artery biopsy may be carried out if the temporal arteries are believed to be involved but, in order to protect the patient from the risk of vision loss, prompt steroid treatment should not be held up pending this, or any other, tests/results.

Patients with GCA do have a small risk of experiencing aneurism and for this reason it is recommended that chest/abdominal X-rays should be carried out every 2-3 years throughout treatment and in the years following remission.

I hope this helps to allay your fears, Janet - personally, I always felt that those of us with diagnosed PMR were 'lucky' in that we were mostly already aware of the linked condition, GCA, the symptoms to look out for and the need for prompt treatment.

I had undiagnosed, therefore, untreated PMR for just under a year, so was at higher risk of succumbing to GCA from the untreated inflammation coursing through my body. I did succumb and after 3-4 weeks of appointments with various GPs, I was finally diagnosed with both PMR and GCA....by a pharmacist initially! I was blessed on many accounts, firstly that I didn't lose my eyesight, secondly that I landed under the care of an amazing rheumatologist second time around, with a special interest in PMR/GCA and, thirdly, that I am in remission, and have been for more than 4 years now. I stay around on this site from time to time in the hope that my experience and eventual remission might give a little boost to everyone still struggling. Stay positive whilst at the same time remaining alert and, importantly, avoid scaremongering.

[JanetRosslyn in reply to Celtic]

Thanks Celtic. I read the post at 6am this morning, just before I left for work, so didn't have time to do any research and just 'reacted'. I agree, I feel lucky to have 'just PMR'. I also feel lucky to have a doctor who seems to be 'on the ball', and to have found this wonderful, informative forum!

[Gosingen in reply to Celtic]

Well said Celtic. This scaremongering isn't good. I can't remember where I read it now, but somewhere on a "legit" site it stated clearly that folks with GCA do not have increased mortalilty rates in comparison to the general public. Hope this makes sense and allays some fears amongst readers here. Don't bellieve everything you read but do stay informed.

[DorsetLady PMRGCAuk volunteer]

Totally agree with Celtic, as like her - been there, done it, got the T-shirt.

GCA can certainly be life changing, but fatal? Maybe, but not in as many cases as various other illnesses.

On here, we are always at pains to advise people what to be aware of in relation to GCA and with good reason. The "3 wise monkeys" as I refer to us all had undiagnosed PMR and/or GCA for a number of years. However, it was a good number of years ago, and hopefully doesn't happen so much nowadays. She says fingers crossed. If this forum had been about then I'm sure we would have telling the doctors what it was, rather than the other way around!

Even partial sight loss can be devastating, certainly took me a good six months to get my head around it, but life does go on, and most things are still possible to achieve. It might be very frustrating at times, but as I've said before, "it is what it is".

Must admit nowadays I find my arthritis more restricting than my mono-sightedness.

[Tonylynn]

This article was written by two members of the American academy of optometry and I could not even find the journal on a web search. So... Has it been peer reviewed? It is irresponsible to write of GCA and death. Yes, stroke risk might be slightly increased (hence aspirin) but rarely terminal.

Also, biopsy of temporal artery is not always positive in GCA and ultrasound is now proving more reliable together with fact that non invasive, repeatable, inexpensive. Anyone offered a biopsy would do well to ask if they can have ultrasound instead. It is true that the number of persons capable of doing this is limited but the more those diagnosed with GCA ask for it the greater the pressure to train more.

(If it is not available contact your local CCG and ask why not).

[PMRpro Ambassador in reply to Tonylynn]

It isn't anything to do with the CCGs. The CCGs spend the money they are allocated on services that hospitals offer. They cannot purchase services that do not exist.

Currently many hospitals in the UK don't offer the ultrasound diagnosis because, as you have said, there are too few trained operators - mostly they are the centres and doctors who participated in the TABUL study and were trained to do it. It takes 6 months to train someone to do it at a good enough level to be reliable and that is a considerable cost.

[Tonylynn in reply to PMRpro]

The CCG's need to commission fast track referral for GCA. There is no point in doing so if the service does not include ultrasound of temporal arteries and other superficial branches of external carotid. (Previously one would argue for TAB). An oral surgeon informs me that ultrasound technicians capable of using ultrasound to assist in the diagnosis of GCA are available in oro maxillary facial surgery departments. ( I need to follow this up). My local rheumatologist tells me he is able to access the facility via a vascular unit.

I presently have that locally " the CCG are looking to confirm the arrangements currently in place for urgent assessment of GCA at our 5 main acute trusts." I have responded by pointing out that my wife only got to be seen urgently for her suspected GCA by being seen privately, despite GP writing "? GCA urgent".

I await the reply with interest. Perhaps they will offer to refund the private consultation fee !!!!!

[piglette in reply to Tonylynn]

My GP refused for me to have an xray on the NHS so I went privately. I said that he owed me for it, his reply was "well you know the diagnosis now what are complaining about? Anyway I am free." I pointed out that as a taxpayer I am paying towards the one hundred and fifteen billion pounds that helps pay his salary. I have not seen him since!

[PMRpro Ambassador in reply to Tonylynn]

Well for a start - urgent was the wrong term. Urgent just means being seen sooner than routine - but can still be a few months. GCA is a medical emergency and should be referred in the same way as stroke or MI. They wouldn't write to the consultant for those - they would send the patient to A&E with a referral note for emergency assessment. That is what they should do with GCA.

My optician in Scotland did that if a patient turned up to see him with visual symptoms - examination, phone call to hospital, referral letter pressed into patient's hand and if necessary an ambulance to transport them, he wouldn't allow them to drive alone. If an optician can do it, so can a GP. Even paramedics (in Yorkshire at least) are taught to recognise and treat potential GCA as a medical emergency.

[PMRpro Ambassador]

Since you have raised the question:

GCA can be fatal - but it is very rare...

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

This paper reports on a case and in it it says "... and may be attributable to insufficient treatment. Death is usually caused by coronary or vertebral arteritis in the acute phase of the disease. Late mortality ... is very rare."

It would be due to basically the same mechanism as blindness occurring but the blockage would be in a different artery, leading to a stroke causing considerable damage to the brain - and as we all are aware, stroke can be fatal. Once the patient is on an adequate dose of pred the risk recedes considerably because the inflammation that makes the various arteries narrower subsides and obstruction to the blood flow is far less likely.

[piglette]

Personally I was not impressed with the writing of this article. Though I did like the comment

"It often strikes people in their fifties who are still employed".

What about people in their fifties who not employed, are they OK?

[30048]

Thank you so much...whoever contributed this website. I have both conditions...so it was very helpful.

[30048]

Just read the other comments...living with both theses conditions...I thought it well done. It gave me some helpful hints about trying to lead a " sightful" life ...I.e. Amber glasses.( Not mentioned by either of my eye doctors) I know ...I need better doctors...but they are all lacking as far as I can see. The one hard thing is that prednisone blurriness makes it more difficult to determine symptoms . That said....it is always better to be aware of what can happen even though it is scary at times.