Coping with Giant Cell Arteritis
Posted , 13 users are following.
I was diagnosed GCA in October last year. CRP level was 76. Immediately put on high dosage prednisone and within weeks, CRP down to 4, currently on 7. Every test possible was conducted, cardiac, vascular, optic. Biopsy of minor temporal artery confirmed diagnosis which was first mis-diagnosed as TIA by locum at ([rivate) med centre. (Thank goodness I kicked and screamed or else I would have been happily chomping on statins and slowly going blind!) Fortunately, no eye damage and disorder localised to temporal area. Over time, headaches, auras, jaw claudication went. The paper-thin skin remains. Just one little bump - even a handshake - produces ruptured blood vessels, but more of a talking point than a worry. So do the dry, gritty eyes. Artificial tears clears that problem. Even tastebuds returning to normal which is the best news for a devout foodie and food photographer!
Now remains tapering off prednisone and other medications: Omeprazole to reduce acid in the stomach, low dosage aspirin as a blood thinner and Fosamax (once weekly) to maintain bone density. I was told to eat lots of fibre, eat fruit, drink milk. Any side-effect issues were not a problem and could be dealt with, said the doctors. The tonne of weight I've put on? The moon face? Just for the duration. Don't let it bother you. Blame everything on Prednisone. Of course all this was a challenge to tolerance: I hadn't seen a doctor in 20 or more years (thought they were there to kill you), never had any drugs other than the occasional paracetemol, fit and healthy, (I will be 75 in a couple of months' and play competitive petanque three times a week) and suddenly I was drowning in them! But I knew it was par for the course. Grin and bear it, it will all go away in time.
Both my GP and hospital rheumatologist are thrilled with my progress; they respect my desire to be kept informed and understand what is happening; case notes are shared between the three of us, they say attitude helps enormously.
And I have a mountain of respect for them - and our universal health system!
Cheers from Auckland, New Zealand.
1 like, 179 replies
Danrower sandy08116
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Dan
sandy08116 Danrower
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Wish you did too, Dan. It must be a nightmare, especially with the uncertainty of the alternative to Obamacare. Of course we pay a universal tax that includes hospital health care so, in effect, cannot claim it is free, but we've got peace of mind - it's for every person, not asset-tested. In all the hospital visits, all tests, consultations, the total cost to me was less than $NZ 20 - three tickets for car parking!
I gave up medical insurance when premiums rose and after friends said I was mad to pay for something we get for free.
EileenH sandy08116
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And medical insurance almost always excludes anything to do with a chronic illness - in the UK they might pay for diagnosis but then say no more at renewal. I even know some people with BUPA cover from their employer who, after a year or so, were "no more for PMR and PMR related" stuff. And as we all know, insurers are very good at evading paying out!
Kdemers EileenH
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EileenH Kdemers
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sandy08116 EileenH
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There is a wait for elective surgery but no one is left out. GPs are the key to making sure their patients do not suffer unduly.
Kerry, I wish things were different for you. In a (unrelated) discussion online, I made a comment how our healthcare system is funded through income tax (even our superannuitants' pensions are taxed) and available for every citizen, permanent resident and through reciprocal deals, extended to countries - like the UK and Australia. We have another government agency - ' the Accident Compensation Corporation (ACC) responsible for administering the country's universal no-fault accidental injury scheme. The scheme provides financial compensation and support to citizens, residents, and temporary visitors who have suffered personal injuries'. (This stopped the horror of suing for injuries!) What I didn't expect was a barrage of disgust that it was Stalinist, communist, socialist. So, I posted a graphic of non-communist countries in the world that have universal healthcare and asked if he considered Britain, Australia, Canada, most of Europe communist countries.
Rimmy sandy08116
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Obviously some people have no relativity - 'historical' or otherwise about WHAT amounts to 'Stalinist,communist ot socialist' ! Fact is the impoverished populations under these regimes hardly had what we would regard as 'healthcare' at all - so they are very silly to say such things as you imply. NZ is in so many ways a great country to live in - in this contemporary world and although I have been resident (with NZ citizenship) in OZ for half my life I am still entitled to a proportion of my age pension from NZ under the reciprocal agreement. I am also equally grateful (although I make jokes occasionally) to live in Australia which generally has a pretty good public health system. Private health insurance is a more complicated matter however and there is some debate about its merits and 'value' unless people pay top dollar and dentistry is still very expensive even with insurance. But still for most of us both Australia and NZ are quite privileged countries by world standards despite the fact it is frustrating sometimes to confront a lack of awareness and adequate 'education' in this PMR/GCA area (for example) - which is obviously though not confined just to our part of the world.
sandy08116 Rimmy
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sandy08116
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So who is prone to GCA?
My doctor told me this little curiosity, and this article reinforces it:
'GCA is the most common form of vasculitis in patients over the age of 50 years. Data from population-based studies estimate that 1 in 5,000 people over the age of 50 years are affected by GCA each year. The prevalence of GCA is estimated at 278 per 100,000 people over the age of 50 years.
Who gets GCA?
Age, gender and ethnicity are all risk factors for GCA.
GCA affects people over the age of 50 years and the risk of GCA increases the older one gets.
For reasons that are not clear, GCA is 2 to 3 times more common in women than in men.
This condition is most commonly seen in people of Northern European descent and is rare in other ethnic groups like Asians and African Americans'.
(http://www.vasculitisfoundation.org/education/forms/giant-cell-arteritis/)
mmm . . . Rare in Asians? I consider myself Asian. Born in (Ceylon) Sri Lanka, six or seven generations Asian. But ancestors - especially the earlier families - were all North European, Dutch, German, French-Swiss etc. (More recent were British.)
In talking with family and friends in our Dutch Burghers of Ceylon community, apparently GCA is very common! You'd think after so many generations, so much integration, this little naughty would have been bred out of existence. Not so!
Rimmy sandy08116
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I sometimes wonder why my 'nice' Northern European ancestors didn't leave me a castle in Wales or Ireland - rather than GCA !!?
EileenH sandy08116
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Rare doesn't mean it doesn't happen. It just doesn't happen as often. Unfortunately a lot of doctors don't get that concept!
You have northern European ancestry and that probably applies on both side of your family tree. Genetics is a strange phenomenon - and recessive genes hide there to appear at some very unexpected points when they come from both sides!
sandy08116 Rimmy
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sandy08116 EileenH
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Michdonn sandy08116
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Genetic is funny, both my parents die with their appendicis, they had three boys, all three of us had acute appendicitis about nine years old. We're all Diabetics like our father and our children are Diabetics, but none have had appendicitis.
sandy08116 Michdonn
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Wow! That's quite an account.
sandy08116 EileenH
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When I told my kids about the genetic link, they said oh thanks mum!
Anyway, can soothe their fears a bit. My husband, their dad, was a Cornishman (born in St Austell). Thinks . . . they weren't originally Vikings, though, were they?
Michdonn sandy08116
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EileenH sandy08116
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The Vikings got EVERYWHERE!
My maternal grandfather almost certainly had PMR - in the days when it was just "rheumatics" and it lasted for years for him too. My mother didn't and I don't know of anyone on dad's side - just other nasty heritable tendencies...