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
Rimmy sandy08116
Posted
Hi Sandy
You sound 'upbeat' and I am thinking with the thorough medical attention you ended up getting I should have stayed in Auckland myself and maybe not migrated to OZ 35 years ago !!
Anyway curious to know where you are at in your tapering - you sound like you have done it all quite quickly and relatively successfully. I also have (unconfirmed by biopsy) GCA (initially PMR) and have so far tapered down from 60mg to 40mg - resulting in feeling MUCH more relaxed and not so 'racey and ragged' as I had come to call it. I am encouraged somewhat by your comments despite my chubby face and yes that thin skin on the top of my hands as well as first signs of mild osteopenia - luckily not much else so far.
I am 65 so hoping I will have a chance to resume a more normal life one day without needing to 'fixate' on this sometimes irritatingly absorbing disease.
Thanks for your interesting post !
Best
Rimmy
sandy08116 Rimmy
Posted
Hi Rimmy - I'm sure Oz care is just as good. Makes us feel quite smug knowing we've got excellent national health care if we need it.
Monitoring by rheumatologist done every two months. He plots prednisone reduction. It will take 18 months. GP is in the loop as well. Currently on 5mg prednisone per day and will drop further in a few days.
Oh the moon face! Was warned about it and it happened. We laugh about it. Upside is no more wrinkles! Yes, it's been a challenging time and I would love to wake up to feeling 'normal' again. Getting there, though. Keep well - and smiling.
Anhaga sandy08116
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One point of concern. Fosamax should not be prescribed to "maintain" bone density. It should, like all the osteoporosis meds, be treated as a medication of last resort if you have started out with good bone desnity, or even osteopenia, and have been unable to maintain or improve your bone density through careful diet, supplements and appropriate exercise. Several of us on this and the Osteoporosis forums have been able to maintain and improve our bone density despite being on prednisone. I do know that the initial high dose of pred for GCA is a worry, but I am sure you must have been able to reduce to a moderate to low dose after a year?
Did you receive a DXA scan before starting fosamax?
Kdemers Anhaga
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Anhaga Kdemers
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Apparently walking is one of the best exercises. I have also taken up Nordic walking, the walking with the two poles, as that is good for increasing upper body strength and keeping one's spine upright. It's also supposed to increase calorie burning by up to 30% if that's of interest to you! A weighted walking vest can also be a useful additon to the wardrobe, especially the kind where you can gradually increase weight carried from just a few ounces to several pounds by inserting small weights from time to time.
sandy08116 Anhaga
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sandy08116 Kdemers
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Good to hear you are doing well, Kerry.
Walking is good but mention the words 'do it everyday' and it becomes a chore. Instead, I play petanque (three times weekly) which is a mild and sustained exercise. And there's the physical skill and camaraderei - the support of friends. Hurling three 710gram metal boules per end can be considered weight-bearing exercise.
I told the doctor I couldn't stop eating (weak excuse for increase in weight) but he said this was a side-effect of predisone, it will go. I like his attitude!
EileenH Kdemers
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Michdonn Kdemers
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sandy08116 EileenH
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EileenH sandy08116
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That's fine - as long as it isn't skimmed milk and you really can drink enough to give you an excess of calcium and are either taking vit D as well or are definitely replete. The whole point of calcium supplements when taking pred is that pred makes you shed calcium through the kidneys. A study showed that taking calcium and vit D supplements protected patients from bone density loss - on its own, without any bisphosphonates. Calcium supplements have far fewer side effects than bisphosphonates - but you need vit D and a small amount of fat to absorb it all.
Anhaga sandy08116
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sandy08116 EileenH
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I buy full cream milk only. I can't see the point of removing all the goodness from it.
sandy08116 Anhaga
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Not to worry. I don't drink heaps.
I like my coffee half milk, half coffee.
EileenH sandy08116
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Me neither, except I can't abide the taste of full cream milk in my tea! I know people who drink gallons of skimmed milk because of the claims that "it has more calcium" which of course is relative, there being no fat included so the proportions are changed. And there is no fat to transport it - so it isn't absorbed.
sandy08116 EileenH
Posted