Giant Cell arteritis (temporal arteritis)

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Giant Cell arteritis (temporal arteritis)

Postby Princess mango » Fri Mar 14, 2014 8:34 pm

I woke up at 4.30 yesterday morning with a horrific headache. I took painkillers but did no touch it. I got a doctors appointment this morning, the pain still horrific after questions he took blood to check my ESR gave me a prescription for prednisolone explaining that he should test for GCA (the above). I have to go back on Monday for results and have an intensive course of pred of 12 pills a day.
I have had theses headaches in the past before I was dx with fibro. I am also being referred for a second opinion to another rheumy as earlier this month my RF was raised and doctor not happy. By the was still had headache from hell over a day and a half later. Any comments thanks in advance ((( hugs))). :!: :?:
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Re: Giant Cell arteritis (temporal arteritis)

Postby Revjan » Fri Mar 14, 2014 10:19 pm

I have temporal arteritis. It's another autoimmune disease. Causes terrible headache, pain in jaw and face, sore scalp, blurred and double vision. The only treatment is prednisolone in high doses. Horrible as these drugs are, please do take them as the disease can cause swelling and pressure on the optic nerve and can lead to blindness if not treated.
You don't mention your age but this disease rarely happens in those under 50 but I am only 47 so there are always exceptions!
Good luck and hope you soon feel better. It takes a while for the pain to go but you can still take your painkillers with the steroids. Xx
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Re: Giant Cell arteritis (temporal arteritis)

Postby Princess mango » Fri Mar 14, 2014 11:55 pm

Thanks Revjan, I'm 56 and was just a bit shocked at my doctors reaction and to be honest just a bit scared. Have checked with Mr Googly. And realise that he is doing everything is by the book. The pain killers arn't doing much good but I'm resting, thanks for you comments. It's nice to know I'm not the only one, not that I would wish this on anyone. Gentle hugs.
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Re: Giant Cell arteritis (temporal arteritis)

Postby littlemac0191 » Sat Mar 15, 2014 11:47 am

I have had a horrendous headache for nearlt 10 days now and just thought it was migraine, I already have a dropped jaw so I get pain in my face. I had my eyes tested recently as I had been having problems with my vision. I now think a visit to the doctors is needed. thanks very much for the information. karen
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Re: Giant Cell arteritis (temporal arteritis)

Postby hippychick » Sun May 11, 2014 9:59 pm

Aw I do hope that your symptoms weren't GCA because I know how scary it can be and I was only suspected of having it 3 years ago.

Like many who actually do have this condition, I'd had a worse than my usual level of headache for 2 weeks and finally went to see the doc but had to see a locum as my dear chap was on holiday. Anyway, I told this locum about the headache, TMJ pain and temple tenderness was but he just increased my Nortriptyline from the 10mg to 20mg.

However, another 2 weeks went by and the pain was getting even worse, so I made another appointment and managed to see my own GP who acted very promptly once listening to my symptoms and examining me. Next thing I knew, he'd asked me to sit back in the waiting room while he rang the hospital and would then call me back in, whereupon the minute I went back in, he handed me a letter he'd just hand written and told me to go straight to the local hospital GP referral unit. Bit of a shock as you can imagine.

Decided I'd best stop off at home and take hubby with me JUST incase I might not be able to drive myself home or have to stay in for whatever my doc thought I might have wrong. Registrar who saw me in the GP referral unit was certainly on the ball and I'd had an ecg and blood tests done before I could blink and was quick to return to tell me what his suspicions were which was that he thought I might have Temporal Arteritis and went on to explain it. I had an idea what it might have been having been a nurse way back in the days of gas light as 'twer :lol: But it did sound awfully scary as he gave us the information and the most frightening thing for me was the risk of possibly losing my sight. So, the course of action was to be maximum dose of daily steroids, review by a consultant neurologist in a weeks time and if there was some improvement, an artery biopsy would follow! Certainly didn't fancy THAT of course, but if needs must and all that.

So a week later, see the neurologist and have to report that there's been no improvement with either the strength of the headache or the temple tenderness BUT the TMJ pain had been got under control at least. This meant that my diagnosis WASN'T the Temporal Arteritis, (aka Giant Cell Arteritis -GCA), so I was able to come straight off the steroids without even having to be weaned off of them and would now NOT require a temporal artery biopsy pheeeew!

But with all that said, had my diagnosis confirmed the GCA, I would have had the biopsy regardless and remained on the whopping dose of steroids with all their side effects because it's the best treatment for it. Admittedly I wouldn't have been exactly 'happy' remaining on steroids long term because I'm already one of the 50% of fibromites who have unexplained weight gain and steroids do cause weight gain too plus I already have osteopenia and steroids increase the risk of osteoporosis which I'm already at risk from, BUT if it were to be a choice between developing full blown osteoporosis OR losing my sight....hey...no contest, soft bones it would've been :crazy:

I certainly can't emphasize this enuff to any other fibromites who may have or be suspected of having this quite serious condition. If you have any of the symptoms that could be GCA you MUST get it checked out and do whatever the medics advise instantly and then you'll be absolutely fine. Just make sure that you DON'T see a LOCUM GP :shock: :shock: :shock: My GP couldn't believe the locum hadn't suspected the same condition and referred me for appropriate treatment instantly :yikes: Suffice to say that same locum is no longer used by my GP's practice :lol:

Gentle huggles,
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Re: Giant Cell arteritis (temporal arteritis)

Postby Theresa34 » Sun May 11, 2014 10:12 pm

My mum is 56 and only recently diagnosed with this condition. Her symptoms were a headache for weeks and a stiff neck. She also went off her food. She is on a high dose of steroids which she will take for 18 months.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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