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.
Hi jan, I'm afraid I can't help you with this one, only to say that I'm sure some of us with diagnosed PMR may also have GCA in areas of our body other than the temple area. I say this because many of us complained of various pains around the body that are not PMR hotspots and are not in areas with large muscles, which is where PMR manifests. And, the GCA is being adequately controlled with ordinary doses of preds.
i understand that the only reason why such large doses of preds are needed for GCA in the temple region is to save the sight of the person concerned, other than that ordinary doses of preds are required for GCA in other areas of the body.
please correct my thoughts if I'm way off target. All the best, christina
really good question. I have noticed prominence of blood vessels in my hands and feet. I originally attributed it to age. also I had PMR involvement of my wrists hands ankles and feet.I believe that PMR is a vascular disease or a type of vasculitis. I wait with anxious anticipation for the gurus on this forum to respond.
Hi Christina, thank you for your thoughts on the subject. One doctor did say to me that I couldn't get GCA if I was already on pred for PMR. But that is obviously not true from the posts I have read on here. It would be interesting to know what else to look out for.
Hi Danrower, I also had pain and swelling in my wrists. Also more prominent veins in forearms and lower legs. Perhaps its down to age, but I am looking forward to hearing from the gurus here as well.
Hi jan, then maybe there is some sense with my theory. However, if a PMR patient developed GCA in the temple area then they would definately need a higher dose of preds, not necessarily to control any of the existing PMR possible GCA but simply to save any sight? Christina
I meant to say that I now have more prominent veins in my forearms and lower legs, only noticed in the last week or so.
Oh and the existing level of preds would automatically be controlling any GCA that's elsewhere in the body. But what would happen should a PMR patient be on eg, 6.5mgs of preds and develop GCA in the body, then I don't know if the 6.5 mgs of preds would be enough to keep any new GCA under control. The question gets deeper and deeper! Regards, christina
I am GCA only. Some are Pmr only or both. From our forum I have learned that each of us is such an individual with aches pains and symptoms! With that said, my reading had explained that GCA or temporal arteritis ends up affecting the arteries in the temporal area and down the neck. Most of us have inflmati on in smaller arteries leading or including the carotid artery which leads to the aorta. Therefore we have to be regularly checked for cardiovascular disease including blood pressure, etc.Giant cells can show up in any artery and even after the steroids have reduced the swelling, those cells linger. All of my pain was from the lower neck up including jaw claudication. Am now on 30 mgs of pred down from 60 three months ago and doing OK. Hope this helps a little and hope you stay with the medical care you need. Weird things do pop up! Ann11195
Hi Ann, i have had PMR since last September. I am wondering if GCA starts elsewhere in the body and moves up to the neck and head, so it would be helpful to catch it before it got there. I wish I could remember who posted about watching the blood pressure in the arms and legs ! I hope that you are not having too many side effects from the large amounts of pred you are taking. Good luck !
That is what i am wondering too. Perhaps when we get down to a certain level of pred it no longer protects us from GCA ?
Hello Jan
I have GCA - I have never had problems with pain and no temporal ateritis, no visible raised veins - didn't look ill at all.
My original symptoms - going on 3 years ago now - were extreme fatigue, felt as if I wasn't getting enough oxygen - gasping for breath after doing nothing, wanting to sleep all the time, an irritating dry unproductive cough - both my cough and my lack of breath had nothing to do with my lungs - I could feel that but was checked anyway. Extremely depressed - I couldn't control my tears. All in all I was in a miserable state - at the time I was "only" 57 and had always been an energetic person.
It was obvious from my blood tests that something was very wrong - but as there were no "typical" GCA/temporal arteritis symptoms the doctors were having a hard time diagnosing me - I was admitted to hospital for tests - after a week with different tests and scans I was sent for a dxa scan - the one that uses a radio-active trace - and there was the answer - GCA.
I was started on a high dose prednislone 50 or 60 mg and the day after I felt almost lke my old self again. I soon realised that I wasn't of course - the first time with prednisolone is wonderful - that changes unfortunately!
Anyway after that long story - I am getting my pred dose down and slowly getting back to feeling more energetic - having the gumption to "do stuff"
I have been working the whole time - except for the first 3 months so what energy I have had has been used at work - everything else has been on hold - I have a very sweet and long suffering husband!
So there you have my experience - don't know if it is any help but hope that you can get an answer soon - it is such a relief when they can finally give a diagnosis and start treating it.
Good luck
Hi Janet. What a worrying time it must have been for you. You must have been relieved to have finally been diagnosed with something, even though it is such a horrible illness to have.
when you say you had a dxa scan , do you mean an MRI or MRA ?
best wishes
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.
I live in DK - I think it is called a DEXAscan?
You have a radio active contrast so that the active areas in your body show up- in my case the aorta and the connected major blood vessels.
If I had to have a chronic illness I think I have been lucky - there are many, many people who are much worse off than me - I realise that there are underlying potentially serious problems that can crop up - but being an optimistic sort of person I am riding high on a wave of determination - helped greatly by the fact that I am pain free - unlike many of our friends on this website.
Excellent explanation!! Thanks. 
Eillen H. Once again there with full info, Take a Bow. where would we be with out you and the other ; Been There and Done it Girls.: Take Care.Dave
EilleenH. e.
No - bit of confusion here! A dexa or DXA scan is a Dual Energy X-ray Absorptiometry scan and is used to visualise bone density:
"During a DEXA scan, X-rays will be passed through your body. Some radiation will be absorbed by the bone and soft tissue, and some will travel through your body.
Special detectors in the DEXA scanner measure how much radiation passes through your bones, and this information is sent to a computer.
Your bone density measurements will be compared with the bone density of a young healthy adult or an adult of your own age, gender and ethnicity."
No radioactive contrast substance is used and the x-ray load is very much lower than a normal x-ray.
What you probably had, Janet, was a PET scan, either using MRI (magnetic resonance imaging) or CT (computed tomography). MRI is the noisy one where a magnet circles your body.
"PET scanners work by detecting the radiation given off by a substance called a radiotracer as it collects in different parts of your body.
In most PET scans a radiotracer called fluorodeoxyglucose (FDG) is used, which is similar to naturally occurring glucose (a type of sugar) so your body treats it in a similar way.
By analysing the areas where the radiotracer does and doesn't build up, it's possible to work out how well certain body functions are working and identify any abnormalities."
You get high concentrations in cancerous cells or inflamed cells - in the case of GCA in the artery walls.
My husband has GCA only. Symptons were persistant headache over eyes, total fatigue and night sweats. His GP did not recognise the illness and nothing was done for some months. Fortunately his glaucoma consultant immediately suspected GCA and did an emergency temporal biopsy the next day which proved positive. Fortunately no loss of sight but the preds raise pressure in the eyes so he is presently waiting a glaucoma eye operation. He also had a pulmonary embolism in January, they do not know why but we expect it maybe due to GCA.