GCA is the most common form of vasculitis!

I have Giant Cell Arteritis which causes inflammation to the medium and large arteries (and can affect the smaller ones also). It can cause lesions, aneurisms or other damage to the arteries which in turn can damage organs. It can result in sight loss, sometimes complete sight loss, in one or both eyes. It can also increase risk of heart attack, stroke and dementia. It is sometimes confused with temporal arteritis which is inflammation exclusively of the temporal artery. GCA often causes anxiety and depression and doctors often know little about it and treat patients as though they are hypochondriacs or attention seekers. It affects mostly women, over the age of 50, who may also have shoulder and/or hip pain and weakness. It would appear that women of Scandinavian origin have a greater likelihood of developing the illness. There is a huge amount of misinformation online, often by doctors who seem unable to differentiate between temporal arteritis (inflammation of the temporal artery) and giant cell arteritis elsewhere in the body (which they seem to ignore). Feeling for a pulse in the arms, legs or the head might indicate that blood is managing to struggle through. What is needed is blood pressure monitoring of each leg and arm because these often differ if the artery is inflamed. If other drugs are required, as they often are, such as anti-hypertensives or anti-diabetic drugs, avoid anything that causes the arteries to narrow (vaso constriction).

[optimist-ok]

That's interesting WMTuk, as my GP & Rheumatologist refer to GCA as another name for Temporal Arteritis.

[Hidden in reply to optimist-ok]

This is a very common albeit serious error. It is possible to have ateritis caused by giant cells elsewhere in the body other than in the temporal artery. If the temporal artery is not inflamed it does not mean to say you are free from inflammation of the arteries elsewhere in the body.

[Suzym2u Moderator Vasculitis UK]

This is the link to the UK PMR/GCA website if anyone should find it helpful pmrgca.co.uk/content/home-page

[piglette]

I read somewhere that GCA caused around twenty five per cent of people going blind in UK, I may have got that figure wrong. Also once you have lost your sight it is irreversible. I also read that the number of people going blind from GCA could be reduced to zero with decent medical training and one hospital in UK was setting up a special group to try and ensure that GCA is diagnosed quickly, as once symptoms occur blindness can happen very fast. It is also thought that GCA and PMR are actually the same disease and the chances of getting PMR if you have GCA is about thirty per cent. As WMTuk says there seems to be very little known about it. It just seems a high dosage of steroids can reduce the inflammation and save people from blindness. I suppose because steroids work reasonably well no one seems particularly interested in finding anything else out.

[PMRpro in reply to piglette]

There is a great deal of research going on worldwide and trials have been done of various other immunosuppressants but so far nothing has been found to replace pred. It is problematical of course since it is known that pred at high doses prevents loss of vision when started quickly enough before damage is done to the optic nerve so it is totally unethical to use other drugs without pred, all you can do is use other drugs to reduce the pred needed or be able to decrease the pred required much faster. It is also difficult since there is no 100% accurate diagnostic test, even biopsy is only positive in about 40% of cases so clinical symptoms remain king.

Several hospitals run a fast-track referral of the sort used for stroke but this is only viable in hospitals serving areas with large populations such as London. Southend and Bristol run such fast-track clinics, aiming to see the patient within a couple of days at most. However, other hospitals will fast-track individual patients if the GP contacts the rheumatology department directly by phone. The greater problem is education of GPs to recognise GCA - it is rare enough for many practices to have no doctor who has ever seen a case, much less have diagnosed it.

The most important knowledge to find a cure is knowing what the cause or mechanism is - and research by Southend and one of the London universities last year has identified neutrophils as being present in not only GCA but other forms of arteritis including Takayashu's. This should provide a means of more accurate monitoring of therapy and also a possible approach for therapy.

[Hidden]

It is sometimes possible to reverse the blindness if prednisone is administered very quickly and in a sufficient dose. If a person loses their sight, the nearest accident and emergency department should be able to deal with it. In my estimation, Eye Doctors, Ophthamologists, Optemistrists, are most knowledgeable about GCA because they recognise when it affects the temporal artery. Anyone with polymyalgia who has a headache should be considered a possible GCA patient. What is very concerning is the number of elderly people in care homes across the country whose polymyalgia is not diagnosed and therefore are at risk of GCA, with blindness, and increased risk of serious organ damage which is often put down to a stroke but could have been avoided.

[piglette]

You are right about eye people, my optometrist is very knowledgable about GCA and is not very old, while ask the average GP and a lot of them have not got clue and will put it down to depression or some such. I often wonder how many older people are not diagnosed.

[Suzym2u Moderator Vasculitis UK in reply to piglette]

A GP will only come across any type of Vasculitis once or twice in their whole working career.

[Delboy10]

It is true that diagnosis is very hit and miss I was diagnosed the first time I went to A and E with double vision but was not treated with steroids I have therefore lost most of my sight I also have the complication of Glaucoma Can anyone explain why I have also gone deaf ?? It seems there is no end to this debilitating disease ?

[Hidden]

The artery has several branches and hearing can be affected as can eye-sight. My eye-sight deteriorated, as I have been told, due to a mild stroke, but I have also lost some hearing and, when I have even the slightest flare beyond the prednisolone efficacy, I have ear-ache and a high pitched ringing in my ears which I take to be a sign that I need a higher dose.

I am sorry you have lost sight and my heart goes out to you. I do hope you are receiving better treatment now than you had in the past Delboy10

[Alliand]

I was found to be C-ANCA positive about 18 months ago. I had the extreme upper body musculoskeletal pain as is typical. The diagnosis after much blood tests, scans, x-rays was C-ANCA vasculitis. PMR/GCA or temporal arthritis was dismissed b/c normal CRP and SED rate. I sought a second opinion at the prestigious Johns Hopkins University Vasculitis Center in Baltimore, MD.

Her conclusion: low titre for ANCA antibody, dismissed granuloma annular proven on biopsy, dismissed PMR/GCA b/c SED and CPR rate normal and suggested I begin a slow taper off prednisone. Given her stellar credentials, I did as she said. Holding at about 8 mg from 16, I lost vision in my left eye temporarily. (about 7 minutes); I took it upon myself to return to 16 mg Prednisone and saw local optometrist. She could find nothing wrong with eyes per se, and concluded it was vascular related.

My treating rheumatologist upon hearing of vision loss added methotrexate to a slightly lowered dose of Prednisone. I see the rheumatologist this week. My maternal grandmother had PMR/GCA also, and there is a genetic component to this disease.My daughter has RA.

I am now reading that ophthalmologists are treating GCA with toclilizumab by IV infusions; here in States, called Actimmune, recently approved for GCA and being used in the Philadelphia area at the University of Pennsylvania, close to where I live.

I am tired of running from test to Dr. to another specialist, blood tests every month...My main problem is FATIGUE AND GROWING FRUSTRATION..

I do not think I have been properly worked up as they say, for the temporal arthritis or giant cell; I am disillusioned with the whole medical process; 1 step foward. 2 steps back and so on; would like to be living a life; what do any of these doctors really know ? What advice to follow? I apologize, but I am getting angry and realizing what an emotional toll this disease is taking on me and my husband, while physicians, some well meaning, seem to know little.

I am depressed and anxious, and stubborn. I just responded today to a gentleman who has skin problems as I do also. Thank you for the chance to vent. Like the doctors, I know a lot, and also so little about this awful disease.