Before I start I would like to state that you must always seek proper medical advice for Giant Cell Arteritis. This article is my own personal experience and should in no way be used to diagnose or treat Giant Cell Arteritis.
Let me first explain what Temporal Arteritis (Giant Cell Arteritis) is.
It occurs when the arteries particularly those at the side of the head (the temples) become inflamed. Blood vessels are tubes which carry blood around our body and GCA effects the arteries which are the largest of the 3 types of blood vessels. Arteries take blood with oxygen in from the heart to different parts of the body. GCA commonly effects arteries in the head and the neck.
Anyone with GCA may have a number of symptoms, some of which include:
- Severe Headaches
- Pain and tenderness over the temples
- Jaw Pain
- Vision problems such as double vision or loss of vision in one or both eyes
- Severe fatigue
- Flu-like symptoms such as a mild fever
If you have any of these symptoms you should seek medical help straight away. GCA is a medical emergency and if left untreated can cause permanent sight loss or a stroke.
Now I have explained a little about what GCA is I can now start to share my experience with it.
If you have already read my article 'My battle with mental health' then you will already know that back in 2019 my Dad was diagnosed with this condition. We got very little warning, he just suddenly got a headache. Dad was never one who suffered with headaches so it immediately rang alarm bells with me and although he said there was no need to get a doctor and that he would be fine I arranged a doctors appointment the next day (Monday morning) and it turns out it was a good job I did because he was told he needed to go to hospital straight away for tests.
I remember we got there and they sat him in a chair and we were surrounded by other people, most of them surprisingly young (20's -30's) and they were having what looked like their regular treatment, it was all very laid back. But they took blood from Dad and that was that for a couple of hours. The blood results eventually returned and confirmed the diagnosis of Giant Cell Arteritis. I can't actually remember if he also had an ultrasound scan of his temples too, but he may well have done.
Dad was put and is still on a course of steroid treatment (prednisolone) he started off on 45mg. The idea is that you gradually come down over 2 years and then hopefully stop although some people have to stay on them. We were given the medication and sent home and that was that.
What they don't tell you...
I don't know how to start this next chapter so I'll just jump right in! 2 weeks into taking the 45mg he started getting dementia symptoms. He was repeating himself, getting easily confused, not remembering things he normally would and as the weeks went on it got no better. Dad is the most laid back easy going person I know, but suddenly he was short tempered and agitated. He had terrible mood swings and then five minutes after an outburst it was like it didn't happen. He also got extremely depressed and suicidal too. When Dad had other appointments I would mention this and say that he wasn't like it until he started the steroids, but I would just get blank looks. so I took it upon myself to start looking at the side effects of Prednisolone and the more I read the more I saw Dads symptoms. There's the common side effects of things like weight gain and sweating a lot, but there are other side effects too such as 'dementia like symptoms' and psychosis. Which is exactly what Dad was and is going through!
As the months went on as a family we just accepted it as 'normal' for now and I just kept saying once the steroids stop it should wear off. We have often questioned whether he does in fact perhaps have dementia, he had a brain scan but nothing 'exciting' showed up according to the doctor. I keep saying to all the doctors that question me about it that he only started being like this 2 weeks after the steroid treatment.
Twelve months after the initial diagnosis Dad had a follow up appointment with the specialist and we mentioned the dementia symptoms and the mood swings etc and he just casually nodded and said that should start to wear off once your steroid dose goes below 10mg. We left feeling quite positive knowing that Dad probably wasn't going bonkers (as he puts it!) and that eventually he will be ok.
I have since spoken to a couple of my own doctors who have seen what steroid treatment can do, causing psychosis and confusion and I must admit that was a relief to hear someone say they believe you because they too have seen it.
Dad is still on the steroids he still gets very confused and some days are worse than others but thankfully his mood swings have more or less stopped and he's more like Dad again, he has his sense of humour back and we can hold a normal conversation. compared to a year ago he's a completely different person which is a huge relief for everyone. He is due to stop the steroid treatment in October, slightly later than planned because of a short illness. But I am optimistic he will make a full recovery.
What I don't understand is why we were never given any indication of what to expect? The specialist we saw a year after Dads diagnosis wasn't surprised when we spoke about Dads symptoms, I have spoken to a couple of doctors that were also aware of what the steroids can do. Yet so many medical people that I approached had never heard of 'steroid induced dementia' or the other problems it can cause. Surely the nurses in the department were aware of the side effects? I understand not everyone is the same and not everyone gets side effects, but in this instance I feel it would have been better if were told what to expect in the 'worst case scenario' we would have then been prepared. Instead Dad was given the steroids to bring home and a book on 'living with Giant Cell Arteritis’ it had no mention of anything in there either which again would have been helpful.
It has literally meant I have spent hours searching the internet for information on Prednisolone, googling 'steroid induced dementia' and somewhere I came across other peoples stories of them also having the same side effects. It has been an exhausting journey for us and something we were really not prepared for but we have got through it.
I would love the NHS to create a more informative booklet on what to expect so other families don't have to go through what we have (I'd gladly help them write it!)
I'd love to hear from anyone who has had similar experiences with GCA.
For anyone out there that's been diagnosed with the condition or to the family and loved ones, please know you're not alone. I know it's a very scary place to be but there is help out there start with your own GP.
Caroline x
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