What are Symptoms of GCA in body other than head ?

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Can anyone tell me if there are any symptoms of GCA to look out for in the body ?  I remember reading a post a little while ago that said to check pulses and blood pressures.  Do blood vessels protrude in your body like they do in your temples ?  I have a small protruding vein (artery?) in my lower abdomen which my doctor says is probably a varicose vein.  I would be grateful for anyone else's experience on this please.  Thank you.

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  • Posted

    GCA can affect any artery that has an elastic layer in its wall - so it doesn't affect by any means all arteries. Most of the arteries that are affected are deep in the body - the thoracic aorta is the very large artery that takes blood away from the heart, then the arteries that branch off that to supply the body can also be involved. If the brachial artery is involved you will get pain in the arms when you use them - and it is very likely that that is also part of PMR. If the pulmonary arch is involved it is likely to lead to cough and throat symptoms.The arteries in the head (temporal, occipital, lingual, facial and ophthalmic) are the most commonly involved - the only one that was easy to see and do a biopsy on to prove GCA is the temporal artery and that is why the misapprehension has evolved that the only artery to worry about is the temporal artery and why it was called temporal arteritis. Involvement of the occipital artery leads to scalp pain, the lingual tongue pain, facial can affect the jaw and ophthalmic is the dangerous one as that indirectly supplies the optic nerve. Sometimes the aorta down as far as the abdomen can be affected and then the blood supply to the legs may be reduced if the branching arteries there have giant cells.

    Until relatively recently it was only at autopsy that you could find artery walls that had the giant cells present - it is not possible to take a bit of these other arteries to examine except in a major operation. As a result it wasn't clear that many other arteries could be affected. In recent years imaging techniques have been developed so you can "see" which arteries are involved - PET-CT or PET-MRI are the best where a radioactive substance is injected and is taken up by the inflamed tissue and then shows up on the images. It is possible to see the brachial artery using ultrasound - that is the artery supplying the arms.

    In PMR it is thought that the microcirculation is affected in some way - the very smallest blood vessels on the arterial side of the circulation so that the supply of oxygen to the muscles is reduced and the removal of waste products impeded. The details aren't yet clear but there is research being done at present.

    What you can see on your abdomen is a vein - veins are never involved, they don't have an elastic part to the vessel wall. The same applies to the protruding vessels on the back of your hand - the artery is relatively deep in the wrist where your pulse can be felt and those on the back of the hand where they sometimes take blood or put a cannula in are veins.

    The very high doses used for patients with visual symptoms are to reduce the swelling quickly to try to avoid loss of vision. You can't see how bad the blockage is so you have to go at it with a sledgehammer to crack the nut. Most experts feel that much lower doses will control the inflammation in other arteries - but the higher the dose the quicker it will be reduced. If vision is affected there isn't time to wait for a lower dose to work. Even in PMR it is known that a dose of 12.5mg is enough to get a result in 75% of patients within a month - 15mg does it quicker!

    It is becoming clear that it is fairly likely that much of the severe arm and leg stiffness in PMR is really due to GCA - and it is in these patients that PMR happens before they develop any visual symptoms. Some people only ever show PMR symptoms, some people only show GCA symptoms affecting the arteries in the head - and some have a bit of both. However, it is not true to say that because you are on a low dose of pred you cannot develop temporal arteritis or cranial GCA. It all depends on how severe it is. 

     

    • Posted

      Thank you Eileen, as usual you have explained it so well !  I only wish you could write all these important bits of information out for our doctors to read !   Can you tell me, if I had an MRI of my head and neck with the dye, would it show up any GCA problems there may be ?  
    • Posted

      I honestly don't know. There is a new version of these scans, developed by Siemens, which I think does show GCA in cranial arteries - but I can't remember what techniques are used and because it is very new is not widely available. A lot of the problem is that there simply aren't enough of these new devices - which makes the cost still very high and the queues very long.
    • Posted

      I have just had a Siemens hearing aid fitted, it is tiny, very discreet, and amazingly expensive.  Bearing in mind the size of the scanners compared to my hearing aid, I can understand how expensive they are !!

       

    • Posted

      Great, thank you Eileen. So if I read it right, the 'Giant Cells' are actualy in the artery walls and causing the inflamation. Is that right?

       

    • Posted

      I just Googled "diagnosising GCA in cranial arteries" & I was directed to an article from 2014 talking about a cranial ultrasound that may replace temporal artery biopsies to diagnose GCA. I don't think I've heard that mentioned on the forum anywhere. Is it something you're aware of?

      Emis Moderator comment: I have added a link to the article below.

      http://www.eurekalert.org/pub_releases/2014-06/elar-cum061114.php

    • Posted

      The giant cells can be seen in histological slides made from the biopsied pieces of tissue, yes. I'm not sure if they are the cause of the inflammation or the result of it - but they are certainly the evidence of it. Some research is being done into the blood supply to the artery because it is thought that has something to do with the development of the inflammation - the tiny capillaries that are over the surface of the larger artery providing its blood supply. If the hunch turns out to be right then that could be the link between GCA and PMR.
    • Posted

      Oxford University are currently doing a trial on GCA biopsy v ultrasound. I am not sure how far they are with it, they may still just be recruiting.
    • Posted

      Hi everyone, yesterday, 11th June 2015, the unacceptable diagnosis and treatment of GCA was discussed by Lord Wills the debate is being telepvised NOW! On bbc Parliament. Regards, christina 
    • Posted

      The TABUL study (TAB versus ULtrasound in GCA)? It ran from 2010, recruiting for 30 months and as far as I know is finished, reported that it works reliably and recommended that it be rolled out. Unfortunately there is no funding so it is only available where there is someone who trained to do it for the study. Since that is usually a research rheumatologist it's an expensive luxury and not always available on call. In Leeds it is the research consultant rheumatologist who does it when she is there. Bristol and Southend also offer it I believe and probably there are others.
    • Posted

      See my reply to ptolemy - study is done and dusted and yes U/S works. I have talked about it some time ago. But to have staff available to cover it to allow short notice U/S costs money to train and provide the equipment. So it is only available where someone was trained for the study.
    • Posted

      The NHS Innovations debate? The number of people attending is hardly impressive is it?

      And the noble Lord Turnberg - a medical doctor - in taking up his place to speak and thanking Lord Wills spoke of giant cell ARTHRITIS. Now I know patients confuse athritis and arteritis - but heaven help us when a medically qualified personage gets them confused.

    • Posted

      Hi Eileen, yes I did notice the use of arthritis as opposed to arteritis. Will something come out of the debate, we'll see. Regards, christina 
    • Posted

      Thanks for adding the link to the article--wasn't sure if I was allowed to post it.

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