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
sandy08116
Posted
A friend in Sri Lanka is also a friend on Facebook. She has not been well and reading her posts, wondered if she was getting good advice from doctors. Our symptoms were similar. Over several months, she saw doctors, optometrists, - and none picked up on a diagnosis. None asked the right questions. The optometrist suggested she got stronger glasses for vision loss! In my Facebook page, I posted the link to 'Giant cell arteritis: Always keep it in your head', a New Zealand overview of GCAs, written by '. . . an independent not-for-profit organisation whose role is to produce educational resources for medical practitioners throughout New Zealand'.
When she saw it, the penny dropped. Armed with the article, she immediately saw a rheumatologist and GCA was confirmed!
http://www.bpac.org.nz/BPJ/2013/June/arteritis.aspx
sandy08116
Posted
'Giant cell arteritis should be strongly considered in older patients presenting with a new type of headache, jaw pain or visual disturbances'. Visual disturbances - that's what made me realise it was not a three-week 'flu but something else. That's what made me pluck up the courage to see a doctor. Auras. Amazing sensations! Onset unpredictable, length lesser than a minute, always difference in effect. One could be like a vivid burst of (purple) petals, another was a slow blackout that came back as creamy brown with black outlines. If it wasn't part of something scary, I would have enjoyed more of these showings. lol
Friends (at petanque) laughed and said, hey, can we have some of those pills too?
Assure all, I am pre-hippy, a devout coward - knowing my slightly addictive tendencies - and have never even had marijuana in my life!!
Since diagnosis, since prednisone, there has not been any visual disturbances of that level. There is still a slight tenderness of the temporal regions but even this has diminished considerably.
sandy08116
Posted
Dang! Was so looking forward to Thursday (today) - petanque at the club, lunch with friends after, but chest (lung?) pain suggests an infection. Many years ago, my doctor diagnosed an episode as similar to pleurisy, affecting the lining of the lungs and inner chest wall. A condition attributed to Sjogrens Syndrome. But - I can take deep breaths without collapsing in pain and as I am on prednisone, medication is already in place. Now that Preddie has vanquished GCA, I'll just give it something to do during lunch.
Reeceregan sandy08116
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Blimey, that's a shame! I know with this dreaded disease we are more susceptible to these infections. We have free flu and pneumonia shots here for seniors ( am I really a senior?) just considering if I should indulge again this year or whether with this PMR it would not be such a good thing to inject more viruses into my body. After all, the are still debating whether it was a staph infection and blood clot I inherited in hospital after surgery for sinus issues back in Jan 2016 that kicked it into gear in the first place. 🙄🙄🙄. Hope you're feeling better soon. Don't let a "little" thing like pleurisy stop you, you're a fighter! 💪
Michdonn sandy08116
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Hang in there Sandy08116, just a little bump on the PMR journey continue on with a smile on your face, have a great day. 🙂🙂
EileenH Reeceregan
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Both flu and pneumonia shots are recommended - they aren't live viruses but killed ones that let your body learn to recognise them without being at risk of actually catching them. so when you ARE exposed, they have a head start. In the UK and here the shots are also free for younger people who are at increased risk - not just seniors.
Reeceregan EileenH
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Yes, I think I'll get them, flu and pneumonia are rampant here at the moment.
sandy08116
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'Flu injection recommended. It was free (for seniors) so I had one.
sandy08116
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Not having anything stronger than paracetamol for decades, I stick to doctors' orders when it comes to drugs for GCA. Their planned maintenance schedule - according to what I've read online - is spot on! There is one question, though. The pills are recommended to be taken in the morning. Any reason? As I am sometimes in a rush (to play petanque) or on grandma duties (my son bought his second ambulance truck yesterday and drove him and g-child to collect it), I skip breakfast till after and take pills then. Some times after dinner. There haven't been any bad reactions.
Bit of an aside: Yes - so proud of son. He gave up the corporate world when he and his wife were made redundant on the same day a few years ago. He followed his dream - to help people - upskilled to (almost) paramedic level, bought an ambulance and started a service. The first year was bleak. The public mindset didn't consider anything past the main national provider. But he did his homework, met with retirement village people and business picked up. Now he has up to 14 patient transfers a day. He doesn't want to disappoint anyone or turn down jobs. Time to expand.
I like his caring attitude. He told me he was once transferring an elderly lady to and from hospital. She told him about living beside the beach (on Auckland's North Shore) with her family. Haven't been there in a long time, she said. It was on his route, so he drove down to 'her' beach and she had time to look around, recall memories.
Michdonn sandy08116
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Good for him sandy08116, you should be proud! 🙂
EileenH sandy08116
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The received wisdom is that taking pred all in one achieves a better antiinflammatory result because you get to a higher blood level and this is particulalry inportant in GCA. That's fine - but it doesn't take into account that the antiinflammatory effect of pred lasts 12 to 36 hours - and if you are a 12-hour person that means the inflammation could be creeping up later in the day. That certainly is very obvious in some people with PMR and they do far better and sometimes actually manage on a lower dose by splitting it.
The second piece of received wisdom is that taking your pred in the early morning with breakfast means less adrenal suppression. A study showed that 5mg taken at night suppresses adrenal function more than 15mg taken at 8.30am. All well and good and that's what they preach - BUT that is only of importance where the total dose is 15mg or below and for a short period as is commonly used in much of pred use.
Where the dose is above 10mg for any length of time (more than 6 -8 weeks or so) it makes little difference when you take it, adrenal function will be suppressed by the prescence of corticosteroid in the body. The longer you have to take it - the longer your body is likely to need to recver normal function.
Another point about taking it early morning is that that allows more pred to have left the body by bedtime - so potentially will interfere less with sleep. That is the theory. Everyone is different and some people find taking their pred before bed reduces the unpleasant effects some people experience. Some people, for example, find pred makes them excessively sleepy during the day - taking it before bed helps them sleep and have a better day. Or they have woozy or dizzy episodes soon after taking their pred - then they happen overnight while they are asleep.
But it is fairly important to take it at the same time every day - because when you delay it there is a risk the inflammation will mount up further. The cytokines (pro-inflammatory substances) are shed in the body about 4.30am. The sooner after that you take the pred the less inflammation they are able to cause. A German sudy showed the optimum time to take pred to avoid morning stiffness - equaling preventing the cytokines creating inflammation - was 2am and it was on that basis that Rayos/Lodotra was developed. You take it before bed, it releases suddenly 4 hours later and RA/PMR patients have no morning pain and stiffness. That is less of a problem in GCA - but the inflammation is and if you have morning symptoms on the dose you are on then you need to take it as soon as possible.
sandy08116 EileenH
Posted
'Where the dose is above 10mg for any length of time (more than 6 -8 weeks or so) it makes little difference when you take it, adrenal function will be suppressed by the prescence of corticosteroid in the body'.
It makes sense to allow adrenals to adjust, now that dose reduced to 7mg. The sleep issue is not recent - I've always had problems going to sleep. And never matter what time, I wake around 4am!
It's morning in Auckland, time for breakfast - and pills after.
Thank you, Eileen. As always, in-depth, informed advice.
Michdonn sandy08116
Posted
sandy08116, I have read on the internet morning and or splitting. Most sites say morning, I found I did better splitting my doses . 75 in am, .25 in PM, more comfortable. When I get to a small dose I will stop the PM dose.
Summer here just returned from a nice walk. SMILING 🙂
sandy08116 Michdonn
Posted
Hi - not splitting - just want to change times: morning or night, if there are any benefits. Eileen put me right. It's OK for PMA, but GCA is better in one dose in the morning. (Which I still (at 6:49pm) haven't done!!)
Ah - enjoy summer. It's crazy here in Auckland. Daffodils are out, we had a couple of days of winter!!! Some trees are still trying to shed autumn leaves, others have already got new growth!
Keep smiling.
No nice walk for me, though. Today, plumber friend fixed leak in main water pipe to my house (just replaced a metre of old pipe with copper one,) Had a few days without water. That was quite a challenge. The bath was turned into a water reservoir for the duration. He did the job in two hours and charged me less than an hour's rate that I was quoted by plumbing firm. They also said it would take six hours!!! Exercise of the day was helping Alan dig a trench, and now - turning on taps like a lunatic just to experience the thrill of seeing water coming out out them!
Reeceregan sandy08116
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I'd be interested to know as well f there is any reason we can't delay the pred till after midday. I was taking it after breakfast but found by mid afternoon I could hardly move and pain and weakness in legs returning, By dinner time I was a basket case. I am always so much better on waking and have energy through the mornings, so I've just started taking the pred after lunch, and I'm funding while I still get tired in the afternoon, the pain is not so bad and I can function better. I like it better this way.
EileenH Reeceregan
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See my reply to Sandy above.
But if it is "just" PMR - maybe you would do better with splitting your dose? Some early, some later - and then the effect may carry over the entire 24 hours.
Reeceregan EileenH
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I have GCA as well, I think I will do as you suggest, split the dose, morning and afternoon. I already have trouble relaxing and sleeping on pred, certainly don't want to make that worse. Wonderful explanation you gave as well, very easy to understand and follow. Thank you.
EileenH Reeceregan
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Reeceregan EileenH
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EileenH Reeceregan
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Now there's a thought
sandy08116 Reeceregan
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After all, I do think breakfast is important, so why the big deal for delaying it~!!