PMR and GCA vs Aorta

[daphne_retired]

Referring to long term GCA and PMR, has anyone been screened for aorta structural damage as descirbed in Kate Gilberts book? It seems I might have been fighting with PMR since 2008 at least and no drugs of any kind have been offered until 16th Jan this year. I was wondering if I should mention the aorta, to my rheumatologist when I see her and suggest a scan. Her sec is phoning me tomorrow to arrange my first interview. D

[Celtic PMRGCAuk volunteer]

Daphne, aortic imaging is recommended in the case of GCA. The BSR Guidelines for the Management of GCA state:

"Aortic imaging should be considered in suspected large-vessel disease as subclinical involvement is common and may progress to form aneurysm or dissection. This should be undertaken after discussion with radioligists. Patients should have a chest radiograph every 2 years to monitor for aortic aneurysm. If large-vessel involvement is suspected, this may need supplementation with echocardiography or other imaging."

During my 5+ years with GCA, I wasn't aware of, or offered, such imaging, but I have since had the necessary X-ray (a simple chest X-ray) and, thankfully, all is well. My rheumatologist has now confirmed that the X-ray should be repeated every 2 years, and recommends that it is continued in the years post-GCA.

[daphne_retired in reply to Celtic]

Wow, thanks. I am going to mention this tomorrow. D

[daphne_retired in reply to Celtic]

Just thought....What does the chest X-ray show? If I lie on my back, which is a normal position for me during my rest periods, I get discomfort and pain in my ribcage, as it is compressed by my weight, then it hurts to breather. Sitting up and moving again will help, but the symptom can remain. Can that be relevant. I must be careful here, because I have so much going on in my body that I cannot explain, it can be over worrying, and I am not used to that!

[Runrig01]

Agree with Celtic, you are unlikely to get a scan unless you have symptoms of large vessel vasculitis. They may agree to a plain chest X-ray to reassure you.

I had PMR for 14 months before treatment and 3 months after starting steroids developed GCA symptoms. This is almost 2 year ago, as my 2 Rheumys disputed it is possible at 49 with normal bloods. I recently seen an expert who says I probably have GCA as well as Large Vessel Vasculitis. I am due to have an MRA of head, neck, aorta and its branches on Thursday. The reason for aorta and branches is I have symptoms, and an ultrasound showed stenosis of the axillary artery. My Rheumy is now "shitting" himself, as I sought out this expert opinion myself and he has been seen to do nothing. Try not to worry, and good luck with your Rheumatologist. X

[daphne_retired in reply to Runrig01]

Thanks for this, you have been hard at work, and managed to get this action on top of fighting rheumy's for results, (FRFR, just coined that one!). I need to check on symptoms for Large Vessel Vasculitis next, so I can edificate myself before rheumy meeting. At least that is one benefit of having only one rheumatologist serving the county (I am told, we have only one), by the time I get to see her, I should have learnt enough to see through the bull. Was the expert a rheumy that you have seen or another expert? It seems that you at least are now being attended to. What would have happened to you if this was 50 years ago, I wonder. Keep up the good work.

[Runrig01 in reply to daphne_retired]

The expert I seen is a rheumatologist who is also a clinical scientist researching PMR & GCA. Yes I have continued to work although have been off since mid Jan due to flare of the GCA symptoms. I also take Azathioprine and came off for 2 weeks over Xmas, and all the pains related to GCA became unbearable. I am still waiting on an appointment with "the godfather of GCA" which my local Rheumy arranged a few weeks ago when I told him I was seeing an expert. Guess he doesn't want to be seen to do nothing. My local Rheumy phoned me when he received the report stating probable GCA and large vessel vasculitis, now he's worried! Take care and yes educate yourself, everyone here will be happy to help 😃

[daphne_retired in reply to Runrig01]

Thanks again, yes I am finding this site a wonderful help. God knows what I would have done without the knowledge that has been passed to me in only a couple of weeks, by reading and posting on this website forum.

[PMRpro Ambassador]

I only know a few people who have had chest x-rays despite them being recommended in the guidelines. It is now slowly being acknowledged that there is far more vascular involvement in PMR than has ever been thought before (heaven knows why it has taken them so long to come round to an idea that was blatantly obvious to me from the start)! Some of it has been due to lack of appropriate imaging - but now we have that available the problem is persuading doctors of the amount of your body that is involved. There is evidence of the brachial artery being heavily involved in PMR - and that is because it is easy to look at with ultrasound. But if they don't look for something they won't find it will they?

To be cheerful - 50 years ago you'd have been very ill if you had GCA, very probably with visual loss and would have had a steady downward spiral, possibly ending with stroke or other catastrophic cardiovascular illness. Pred was only invented in the early 1950s so until then there wasn't even an option to manage it if it didn't burn out on its own fairly quickly. PMR was just "rheumaticks" and I'm pretty sure that people who had it for a long time developed all sorts of cardiovascular disease that weren't necessarily associated with one another.

[daphne_retired in reply to PMRpro]

Next week, I may know more, and will post the updates after Friday completion. Hoping that my rheumy has become knowledgable on PMRGCA since 2008, when I saw her for RA. Never seen her since, so I just don't know, but there has never been any talk of either one at any time with any medical staff at any level over the ten years that I have been questioning them about my symptoms. I think that I am living 'the wrong side of town'. D

[Celtic PMRGCAuk volunteer]

To add weight to PMRpro's final paragraph, my paternal grandmother was in a wheelchair for many years up until her passing and her daughter lost her eyesight before she, too, passed away. I have little information about either of them but since I succumbed to both PMR and GCA, I have often wondered whether they both may have had these conditions, therefore in my genetic make-up.

[Hidden]

I am wading into the debate as an interested bystander and someone who still doesn't have a diagnosis although does have as yet unexplained jaw claudication as part of my peculiar mix of symptoms.

I have an enlarged thoracic ascending aorta which showed up on CT scan but not on a plain chest X ray. I have been chatting to someone with a large vessel vasculitis which interestingly didn't show up on MRA but did on CT PET and they were very symptomatic.

My new Rheumy, who trained in Leeds, was telling me that they were increasing MRA ing their Behcets patients ( they can have large, medium and small vessel disease ) and they are finding a lot of sub clinical disease.

I think for the medics the difficult question is how much to go looking for if the patient doesn't currently have symptoms. Runrig's Rheumy is a total plonker ( I haven't named names ) and her care has been shocking. If you find something, that potentially is never going to cause a problem, are you just burdening patients with that knowledge? I know of many patients with an Aortic Abdominal Aneurysm who feel they are living with a ticking time bomb inside of them and worry at every ache or pain etc.

I am not saying don't look but finding things isn't always a totally benign process. Much depends on a patients personality as well and how they would deal with the news that there may be some inflamation in an artery, that may, someday, cause them problems.

[PMRpro Ambassador in reply to Hidden]

But the whole point of screening is that you find it early. If there are signs of an AA (aortic aneurysm) you monitor that patient and intervene if it continues to grow. Some don't grow so there is no point doing anything to that one. Others do and then you act. These days it isn't a case of a big operation of a thin walled balloon that has started leaking - caught much earlier with an aorta that still has a thick wall you use a stent as the first approach.

It is no different from the AAA screening introduced for all men over 65 and any under 65 or women with a family history of AAA. The advantages of that screening are obvious and proven.

If patients with an AAA feel they have a ticking time bomb then the background explanation hasn't been done properly. There is a very low risk until the diameter exceeds 55mm (2in) and at that stage an intervention will be considered. Above that the increasing size raises the risks and the chances of it pressing on surrounding organs and causing pain. If there are no symptoms until it achieves a size where a stent or relatively safer major surgery is no longer an option the patient will present at their doctor with a problem where it really IS a ticking time bomb with the only option being a major operation with even more attendant risks since by then the patient is probably also much more frail and a large, thin walled aneurysm is all too delicate when the surgeon starts operating. I'd far rather know early on so the treatment can be planned and not end up an emergency with the paramedic having to drive slowly to avoid bumps.

[daphne_retired in reply to PMRpro]

This is an an extremely useful and educational post. Thanks very much for sharing this with me. On Thursday, this will form part of my discussion. If I am allowed so to do!

[Hidden in reply to PMRpro]

I am not sure if I haven't expressed myself very well, an increasing problem these days, or if I just didn't choose a very good example but I am not sure you got the point I was making. There are harms attached to screening processes. I am not saying don't screen but there has to be recognition given to the often huge psychological effects that something like an aneurysm diagnosis can bring.

The AAA analogy was aside from the situation in patients with GCA who sometimes have sub clinical aortic disease. Will it ever do them any real harm, is there any point in identifying it, what is the best scanning method to use, should it be treated and followed up? These are some ( but not all ) of the questions that need answered. Part of the problem lies in acess to scanning. As Runrig shows CT scans are easily available but not great at showing Vascular inflamation. MRI's are better but not full proof. MRA's take longer and are more expensive, CT/ PET's are very expensive ( £1300 a scan, only 3 in the whole of Scotland ). Sometimes we get the test that is the most easily available and cheapest, not the one that is the best at diagnosing the problem ( ultrasound is another problem entirely! ).

[PMRpro Ambassador in reply to Hidden]

I was really just addressing the concept of patients apparently not understanding that AA screening was to circumvent the "ticking time bomb" they are afraid of.

AAA screening with U/S is easily available, we could be tacked onto the national screening programme for that. It is a bit more complicated for thoracic AA because of those darn ribs that get in the way of U/S - but I had an echocardiogram recently and that must also allow imaging of the thoracic aorta.

It is only one for everybody to start with. If there is no sign of any aortic distension there is then a much longer gap to the next check. Only the patients with a sign of distension as checked regularly. And there really aren't that many GCA patients - that's half the problem, the GPs don't recognise it. I think the situation would be a lot different if we were cared for by vascular specialists rather than rheumies. Rheumies seem dismally unaware of what can be done these days!

[Hidden in reply to Hidden]

Keyes

I do like the way you present your thinking. You seem to be very knowledgeable about a range of diagnostic imaging methods (and associated pros and cons) and even you seem to know how much these would cost on NHS. I'm only guessing that you work on NHS..a GP or hospital staff, may I ask?

"I am not sure if I haven't expressed myself very well, an increasing problem these days, or if I just didn't choose a very good example but I am not sure you got the point I was making. There are harms attached to screening processes. I am not saying don't screen but there has to be recognition given to the often huge psychological effects that something like an aneurysm diagnosis can bring. "

So you think there will be some adverse psychological effects (what you call, "psychological harm" ) when a patient is found to have AA? I would ask, what you are saying if a sudden death without knowing would be much nicer?

[Hidden in reply to Hidden]

Hi Omega,

I work for the NHS but am not a Dr!

I am not saying don't screen but be aware of the unintended harms of any screening process. I would recommend a book called " The Patient Paradox " by Dr Margaret McCartney a Glasgow based GP ( she also has an excellent blog ) who writes widely on evidence based medicine, numbers needed to treat and screening.

I think we are all individuals. Some patients can live a fairly normal life knowing that they have an aneurysm that is measured periodically and one day will require a fairly large op to fix ( better now with endovascular approach surgery ). Other patients don't cope so well, every twinge or pain they attend A&E wanting the reassurance of a CT scan or ultrasound to make sure that the aneurysm isn't leaking. Their perception is that they have a " ticking time bomb " inside them yet their aneurysm may never reach the size where the benefits of surgery outweigh the risks of not having surgery!

Originally I was trying to make a very general point about screening but I thank you for the implied compliment.

[Hidden in reply to Hidden]

Keyes

Yes, definitely. It is highly useful to be able to access info only people who are working on NHS can provide. Now I understand where you are coming from. Many of us are very ill on a site like this and we have gone through the long process of not getting the type of diagnostic procedures at the right time. Often these are only performed at a critical time when the disease had so long advanced. (Not many of us live nearby the well reputed hospitals)

I hear what you are saying, I totally get it. I can imagine how stressful the profession of nursing can be. Your post was reflective of that somewhat.. It is a highly well rewarded profession abroad/elsewhere too.. Thank you for your input once again xxx

[jinasc]

I had GCA only. I had both the Aorta and Pulmonary ultrasound scan. The relevant information is contained in the British Society of Rheumatologists Diagnosis and Treatment of GCA.

These can be found on the BSR website, the NHS website and PMR&GCA North East Support Website. You can download them from all those sites.

[daphne_retired in reply to jinasc]

Thanks Sambucca, everyone has been really helpful as usual. D

[Hidden]

I agree, an earlier detection often leads to a much better outcome. If someone was found to have AA larger than 5cm at the age of 80 years old (like my relative) by accident, everyone is getting ready for a funeral. Surgery success rate would be around 70% but he may die from the complication given his age.

[daphne_retired in reply to Hidden]

Well, thankfully my test was ok, the result was good. So that one is clear at least. Rheumy date given as 17th March

[ballyboy]

why were you sent for chest xray.