GCA SUFFERERS -HAS ANYONE HAD TROUBLE WITH HEARING ?

Damage to arteries in the head can cause increased risk of stroke and dementia. Doctors overlook what might happen in the future and their only concern seems to be blindness, which, if they are negligent about, they can be sued for. It's impossible to prove that neglected gca symptoms in the head that result in stroke or dementia are directly linked to the inadequate treatment of Giant Cell Arteritis.

It isn't just arteries in the head. GCA can damage the lining of many arteries which predisposes to the formation of plaque - and it is bits breaking off the plaque in one area that cause problems like thrombosis and stroke in another. The small bits break off the original area and are transported through the blood circulation until they come to another partially blocked vessel or one that is too small for the fragment to pass through. The result is the circulation is interupted enough for ischaemia (lack of oxygen supply) to develop "downstream". If the blockage is only temporary it is a TIA, if it is permanent it progresses to a full stroke.

Unfortunately, doctors don't know or don't register this important point. It has been the 'elephant in the room' for many years of my life and it was not until I developed pain in my temples, across my scalp, in my mandible joints, ears anddeterioration of my eye-sight that GCA was begrudgingly diagnosed. Moving aches and pains, one time here, another time there, cystitis one month, claudication in the legs another month, heart pain here and there, clicking neck joints, the list is endless, and the doctor looks heavenwards, and probably writes down on the notes something other than Giant Cell Arteritis because they only know 'Temporal Ateritis', ie inflammation of the temporal artery as opposed to systemic giant cells causing inflammation throughout the body.

I have suffered with tinnitus for 25years & more + hearing loss due to working in a very noisy work place (aircraft production) before H & S came along. The PMR situation is still quite new to me, although after 11 days on 15mg of Pred. my condition has definitly improved. I have noticed however that my tinnitus (both ears) levels have gone way up, I am habitulised to the tinnitus so it is no big deal. For many years  instead of Asprin to thin the blood/assist circulation I have taken the suppliment Ginkgo Biloba, it certainly lowered my tinnitus levels early doors. As with all the other suppiments I take no nasty side effects.

Medicinal preparations are all chemicals of some kind and, if they have any beneficial action at all, can also have a deleterous effect, just as pharmacueticals can. Asprin is one common example, and digitalis another, so ensure that the instructions are read and adhered to. I also take it though I heard of some unpleasant effects that were reported some years ago. 

There is a reported drug interaction with pred and Ginkgo Biloba. I am not sure what it is but I am sure Google does.

Thank you for this Eileen. My GCA symptoms come and go throughout my body but asprin really helps my walking, especially uphill and as I live on an incline, it helps enormously. It also helps the sensitivity across the top of my scalp, which in the sunshine, feels like my brain is on fire! I know asprin has awful side effects, like everything else it has its plusses and minusses, it's a matter of taking the best positive with the least negative. I haven't had another stroke so I'm celebrating every day as a bonus!

Dear Lisa, ditto here too. I am infuriated by the way I have been treated as though I am a hypochondriac and have no right to have GCA and expect more than a 10 minute appointment. There is very little good information online. GCA is the most common form of vasculitis, yet it is the orphan of the medical profession. No-one wants to deal with it. We really need to auto-immune specialists who will treat GCA with the seriousness it deserves. Being disabled and possibly needing 24 hour care for decades at NHS cost is scandalous but if GCA receives proper treatment from the outset, serious disability is far less likely.

Part of the problem is that these associations may have been suspected but couldn't be proven because the imaging to show the proof wasn't available. You don't know what you can't "see". It still isn't available for routine use except possibly in very large centres or privately in certain large conurbations (London being one). It is a matter of cost setting up this imaging - we're talking hundreds of thousands or more just to get each device - and it has to be housed and operated, maintained and replaced at some point. 

Many doctors' level of knowledge is from several years ago, from when they trained. I too jump up and down about the lack of knowledge, but they have vast amounts of new things appearing every week - if they read it all they'd have no time to see patients. As for seeing a different sort of specialist - the number of autoimmune disease specialists is not large so the waiting lists would be enormously long and you would have to travel long distances to see them. I would do so - but I know people who think 100 miles is too far to travel to a top expert. I was told once that 30 miles was too far. 

But the primary problem remains the same for GCA as any other autoimmune disorder: every patient presents differently and so it is extremely difficult to make the diagnosis by a snap of the fingers. A rash is a rash - measles looks one way, chicken pox another. But autoimmune disorders overlap - even the autoimmune disease specialists struggle at times.

Yes, but when a patient is clearly saying that they have symptoms that they would like to have taken seriously which are dismissed, it will be the NHS who picks up the tab and the patient who suffers long term disability. There is such a thing as misdiagnosis and negligence but proving it is another thing. When the Ombudsman has been declared as 'unfit for purpose', and doctors lie to defend each other, it is not fair to people who have paid in to the NHS all their life in order to be cared for when unwell.

Hi Christina,

I have deleted your post re the documentary. Please do not post these in the forums. If you want to pass the details on you can use the Private Message service or post a general comment saying there is a documentary, contact you for details etc.

Regards,

Alan