I’ve just joined this forum because I was diagnosed with GCA in January and thought I would find being connected to others with the same condition helpful and supportive.
I don’t currently have any problems with my eyes, but I’m very worried that I might develop problems in the future. I am currently taking 30mg steroids plus all the other meds for protecting me against the steroids. I feel some slight pressure in my head most of the time, but it comes back at about 4am most mornings, probably because the steroids have worn off by then.
Glad to be here with you all
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Handloomweaver
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Maybe have a look through this link for general info - and when you feel up to it a browse through the FAQs - but don’t try and take in too much all at once, take your time.
As you will see from link it explains about the 4am connection with a return of symptoms…. But unless they are particularly bad and soon resolve then just monitor them but don’t get paranoid.
As for eyes, provided you are on enough Pred at any given time for your GCA then don’t get stressed about then, but do be aware - another link to look at if you want -
Hello and welcome. You have come to the right place for support and advice if and when needed. I’d like to suggest keeping a diary of dates of medication doses/changes, any telephone calls- what is said and the name of the person you speak to/ symptoms either easing or returning or new; hopefully the last two won’t apply to you. This is something I didn’t do in the early stages and later on wished I had.
I know that gnawing anxiety well. My optician is very well equipped with sophisticated equipment for examining eye health in great depth. I pay privately to have all the tests and Simon keeps slide of my eyes to spot any deterioration. He would directly refer to an Opthalmologist if he spotted anything going on with the optic nerve or cataracts for instance. The price has now gone up to £60.00 which has made me pause for thought. A doctor referral would be free but issue specific. I had 2 grandmas lose their sight and this has led to more focused anxiety, especially as they could have been undiagnosed GCA. My diagnosis remains extra cranial GCA/LVV. I have felt better covering this angle but it is probably overkill.
If it reassures I don’t think so Jane when there’s enough anxiety just having this illness. I pay £9 pcm for my optometrist- this was before GCA as I was once referred to him for suspected high eye pressures 7 years ago. They’re actually ok . For that I can have regular tests, scans, etc. He has my data for all this time and spends a long time discussing my situation. He’s only had 3 GCA patients in 30 years. I’m seeing him next month for an afternoon appointment as he says, ‘your eye pressures are usually a bit higher pm.’ We’re looking at six monthly monitoring and I think it is money well spent.
Be alert for symptoms in between, like double vision or odd sparkles or anything really. Blurring might be Pred. Simon holds this bit of the anxiety for me and it helps.
I will Jane thanks. It was made clear at suspected diagnosis on my visit to eye casualty that I return immediately if I have double vision/eye changes. I had sore eyes on higher steroid doses but eye drops from my optometrist sorted that out. Anyone who can hold my anxiety is a god in my eyes (bad pun!) and David does that for me. He’s very calm, knows a lot about GCA and I felt he had all the time in the world for me.
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