I have read that GCA can affect other arteries than those to the eyes. I have had the frontal dull headaches for weeks, and continue to have the headache even though I have been on Pred for a couple of months. 2 days ago I woke with really blocked ears - tried sinus remedies, gradually during the day hearing almost returned to normal. Lunch time today, both ears blocked badly again. It was sudden onset and is getting worse. Have never had this problem before. (unless swimming in the surf) (which I havn't been doing lately ) Has anyone else suffered with this problem ?
I have lost some of my hearing too. I had tinnitus and ear-ache. Doctors seem totally unbothered. I dont even think they are aware that the arteries to the face and head are very vulnerable to giant cells causing the inflammation which narrows the arteries, causing difficulty for the blood to flow to where it is needed. Even the blood supply to my teeth has been affected through poor blood supply to my jaw line. I take a huge dose of asprin when I get worried about narrowed arteries anywhere in my body. I'm not suggesting you do this because you might have other health problems I dont know about. I have been very reliant of asprin and I dont know what I would have done without it.
Hi flutterbie, I'm sorry I can't help,you with your headache and ear problem, but yes giant cell can present its self in any artery in the body. One member of this forum only has it in her chest and if I remember rightly never experienced any pain at all, but generally felt very very unwell and it was a scan that diagnosed the giant cell in her chest. I understand that GCA that occurs in any other part of the body tends to be treated with about the same doses of preds as for PMR. The only reason why such high doses of preds are required if the giant cells appear around the temple region is to prevent the eyes from blindness. Please correct me if I'm wrong?
But going back to your problem, if your GP hasn't an answer ask to be referred to someone who has. Regards, christina
I had ear problems - and yes, I suppose it felt like blocked ears at times. I also had tinnitus for years with the untreated PMR. After I started pred it improved slowly and now I rarely have a problem. Hearing problems, including tinnitus are listed at GCA symptoms.
Be careful using aspirin though as it can be one of the causes of tinnitus. Other NSAIDs can do it too and at first I blamed using ibuprofen (Advil) to try to manage the PMR pain.
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.
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.
One of my symptoms before GCA was diagnosed was a painful blocked ear. However, it disappeared once I was on a high dose of Pred and hasn't come back since.
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.
I had tinnitus and mild hearing loss identified by a doctor shortly before I was diagnosed. I didn't connect the two until afterward when I did some research. the docs still shrug it off. if you google you'll find a few references.
http://www.ncbi.nlm.nih.gov/pubmed/9872482
As misdiagnose said, the docs seem disinterested. they focused on the visual and the fact that they caught it "early" meaning I didn't go blind. There has been no discussion about the vascular damage to the rest of my body. I've had to ask all the questions and do all the research myself. *sigh*
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.
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.
Hello Flutterbies = I have GCA - on 45 mg Pred - tapered from 60mg for the 4th attempt at lowering!
I have suffered excruciating ear-ache, marked dullness of hearing and loud tinnitus in left ear.
GP referred me to ENT consultant who pronounced everything in working order and healthy & told me to refer back to rheumy, as the root of the problem was (GCA) was too close to be dismissed as gthe "culprit".
Rheumy wouldn't buy it and I'm no further forward with that one. I'm hoping it will all settle down as I get the Pred down further.
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
Thanks to all who replied. I do suspect that I am a candidate for GCA, after reading so much on this site, so I have set my sights on a PET scan (mentioned by Eileen I think) as the best diagnostic scan after you have already started on Pred. I bizarrely hit the zero tolerance level for bad behaviour/stupidity/any negative news etc
a few months ago - not sure whether this is due to the Poly, the Pred or just old age, or all 3, so I avoid any stress I can, so I am taking Husband with me to use his cool, calm logic and hopefully I get referred to a specialist . Or Dr might get a short sharp tongue lashing from me, which even shocks me at the speed of my retalliation. I do feel calm most of the time - maybe that is why - I have learned to vent immediately.
It's really interesting reading these comments. When I was diagnosed with PMR, I had suspected GCA, but the biopsy came back negative. I've suffered from tinnitus with some occasional vertigo for 30 years. It's worse in my right ear, which always feels blocked. I noticed it getting worse in the few years leading up to my diagnosis of PMR and substantially worse, with some slight high frequency hearing loss since then. I have an appointment at an ear disorders dept in a few weeks, so will be interested to hear what they make of it. I also get a terrible wooshing, pumping sensation in my head and upper arms when I get up from a resting position, which can sometimes be extremely painful and cause some loss of hearing for up to 2mins'. My blood pressure is on the low side, but this isn't like the usual head rush. I have an appointment to see my GP about this in a few days time.
I feel that these problems are related in some way to my PMR, along with other niggles, but I find that in the main, GP's in particular only want to treat various ailments in isolation.