Hi, Does anyone know if I should have had a scan or xray after five years with GCA? Bloods are good is the standard answer to all questions!

[5lupins]

I am on 3mg pred and 20 weekly of methotrexate. The fatigue and aching are always around even with the "cure you" physio I have been given. Thankyou everyone.

[PMRpro Ambassador]

Really the only thing of that sort is a chest x-ray every couple of years to check for aortic aneurysm - recommended in the guidelines, almost never done as far as I can tell.

The fatigue is part the autoimmune cause of the GCA if it is still active and/or pred. And I doubt methotrexate is totally innocent! I have yet to meet physio that will "cure" anything with the PMR part of GCA.

[Celtic PMRGCAuk volunteer]

Yes, as PMRpro has said you should be having a chest X-ray every 1-2 years, both whilst suffering from GCA and following remission. If you haven't already had one, it is also advisable to have a DEXA bone density scan every 2-3 years whilst on steroids. Physio can't cure the pain, unfortunately, in fact the usual physio manual techniques are contra-indicated in PMR/GCA - just gentle massage and heat treatment is recommended.

[bowler in reply to Celtic]

I recently had my dexta bone scan, and pleased to say that my bone density has improve since 2 years ago, also my calcium blood test result was just over the level. I only take calcichew, 1 a day, perhaps I should cut them down, as I read that having too much calcium isn't good for you ?

I am never called for chest X/rays, perhaps I should ask for one.

[PMRpro Ambassador in reply to bowler]

The calcium supplement being not good for you story only applies if you are normally healthy, eating a good diet but also taking large amounts of supplemental calcium without taking vit D. The problem with calcium going to the arteries was not found in patients taking calcium AND vit D. Especially in the USA there has been a fad for taking large amounts of supplements - the vast majority of which are not needed if you have a good diet. In the USA milk and orange juice as well as other cereal foods (including bread I think) are already supplemented so adding in supplements is absolutely unnecessary. In the UK they are not so it is less of a problem.

On the other hand - if your blood calcium is raised it needs to be kept an eye on and other investigations done if it continues to be high.

[bowler in reply to PMRpro]

I have looked back at my other blood test results [ I always keep them ] and it seems my last b/test was the first time my calcium has been checked !!

I took the Calcium/Vit D on the advice of my Rheumy as I have been on long term Pred. I have decided to cut them out for the time being.

My calcium level is 2.45 mm/IL [ 2.2 - 2.7 ] I do try and have a good diet, milk, yogurt. cereals, etc., so maybe I dont need the suppliments, even with the long term Pred use.?

[PMRpro Ambassador in reply to bowler]

It's less a case of keeping your blood level "up" and more something to do with the way pred changes the way our body deals with the calcium. To keep the blood level correct is essential for the muscles, especially the heart, to work properly and at the moment yours is slap bang in the middle of the range needed for that. Bone isn't a static substance - calcium is constantly being removed and new bone laid down by trapping calcium from the blood. If the blood level falls, more calcium is taken from the bones and if it isn't replaced that causes the bones to become osteoporitic. It's a very complicated process - but the evidence is that a higher intake of calcium helps prevent the action pred has on this process and helps keep the bones in good shape. As long as I'm taking pred, even at a low dose I shall continue taking my supplements since it still happens even on low pred doses - I quite like the taste and they cause me no problems so why should I object to them? If you DO decide to stop your calceos or whatever you are on do continue to get vit D supplements from the chemist (apparently Boots are good, I use H&B for just vit D since I often take extra). I live in northern Italy where we are far enough south to make vit D from the sun all year round - even so over 80% of the population are deficient and at risk of osteoporosis as a result. The situation in the UK is far worse and even young people who go out in the sun with a lot less clothes on than we rather more sedate ladies are extremely low on vit D. My daughter's was 12 recently - below 20 is severely depleted and ideal is felt to be about 80-120. Mine a few years ago was about 20 - and I never use sun cream or make-up which also makes a big difference to how much vit D your body makes.

[Celtic PMRGCAuk volunteer]

Bowler, you can always ask your GP if a calcium blood test is being carried out automatically with your routine tests. I am on a 3-month course of Vit D at the moment and my calcium levels have been checked at the end of the first month and will be repeated at the end of the course, just to ensure that the Vit D isn't allowing too much calcium from my diet to be absorbed into my body. And yes in the case of GCA you should ask for a chest X-ray every one to two years as there is a small risk of aortic aneurism.

[bowler in reply to Celtic]

Hi Celtic

Thanks for your advice. I will mention it when I go for my next blood test.

You would think that as I see my Rheumatologist approx. every 6 months that he would suggest an X/ray.

[jinasc]

Download the British Society of Rheumatologists, Guidelines and Treatment of GCA and PMR. Read them and then, if necessary, take them to your GP or Consultant and insist they follow them. Yes you need a Dexa scan, yes you need testing for Vitamin D deficiency, yes you need, (if GCA) your aorta and pulmonary artery checked out.

With these illnesses you need to educate yourself and take control.

[jinasc]

This question appeared again in my notifications. I am replying more fully this time and hope it helps those with GCA.

Diagnosis - includes Chest Radiographs (I had never had one)

Complications of GCA

LATE: Inflammatory aorta-arteritis

- development of aortic aneurysm - aortic dissection.

A paragraph on its own headed "What are the areas the present guidelines do not cover?".

Other Vasculitides, including TA due to other causes, other CTD's and other inflammatory muscle diseases.

The document, in its entirety, can be found our our website, BSR website and the NHS website and I would urge all GCA patients to read it in full. I know it is not easy reading, but knowledge is power.

BSR & BHPR Guidelines for the Management of Giant Cell Arteritis (GCA

These guidelines were prepared by a working group consisting of members of the rheumatology and general practice communities, together with patient representatives. They are now officially accepted as BSR guidelines.

And now for the Capital Letters bit:

IMAGING.

PATIENTS SHOULD HAVE CHEST RADIOGRAPHS EVERY TWO YEARS TO MONITOR AORTIC ANEURYSM.

IN SUSPECTECTED LARGE-VESSEL GCA, THIS MAY NEED SUPPLEMENTATION WITH ECHOCARDIGRAPHY, PTE, MRI/CT AS APPROPRIATE.

I just wish I had paid more attention when I first read those guidelines, taken it all in, printed them off and insisted by waiving the guidelines at my Medics.

I don't blame them, they only came out two or three years ago and I should have known better.

I can only pass this on to others with GCA and perhaps what has happened to me and some others may be help you.

[5lupins]

Thanks sambucca, I missed your second reply. I had lots of scans before I was diagnosed as every one of my bloods was way of the scale. A pet scan showed all the arteries in my body were inflamed. However since my bloods showed good results no one will listen to how I am. I am slowly reducing preds but never feel well. I have read the articles you recommended and will insist I have some sort of scan when I see rheumy in August.

I feel an extra bit of Yorkshire Grit will be required ! Thanks for help and advice .