The plot thickens!!

[VickySponge]

Update on eye deterioration.

So inflammation markers are normal and vascular ultrasound clear. Still no contact from the opthamology department for an 'emergency' eye appointment. Tried to call them this morning but, as there was a clinic ,no one was available to take the call.

Today, the headache is unbearable and my scalp is tingling all over. My eyes hurt. In the night my lower lip was tingling too. Anyone else experience this

Just had an appointment form my rheumatologist - told me that because of yesterday's results I categorically do not currently have GCA. I had it in the beginning but the high steroids will have "sorted it". He did not like me challenging him and said that if I continued to do that we would not have a good relationship. I told him I am scared of going blind and frustrated by the lack of integration - he had not received the optician report - only went to GP. GPs have not recived his report from last week. And no date for opthamology. he apologised and offered to write again to opthamology - why can't he phone!!

He thinks it is all cervicogenic and that the tingling scalp is a symptom, that the eye problem is unrelated as they suggested CRVO or something else was happening. He said that when I have seen opthamology and, if i get a definite diagnosis of another eye condition causing the problems , then i am to reduce back to 20mg of pred. This sounds foolhardy given what I read on here. I am now more confused than ever!!

[DorsetLady PMRGCAuk volunteer]

What a nightmare -feel so sorry for you..,

Can you just confirm what dose you are on now?

Whatever it is, sounds as if you need a higher dose if only for a few days-to see if it makes a difference and confirm GCA or not. Not convinced by markers - u/sound seems to be muddying the waters as well.

I had the scalp and headaches -but not lips nor actual eye pain- but like you I’d definitely want GCA ruled out!

Think you’ll have to keep trying ophthalmology dept..,

[VickySponge in reply to DorsetLady]

They put me up to 40mg on Monday from 20mg. Rheumy did say that if it is GCA then I need 60 mg.

[DorsetLady PMRGCAuk volunteer in reply to VickySponge]

At least he said something right… so why not try you on that for a few days as a precaution?

[Nextoneplease in reply to VickySponge]

I’m far from expert but I agree with DorsetLady, it sounds as though you need (a) more pred and ( b) that ophthalmology appointment. Surely a negative ultrasound doesn’t rule out GCA?

Keep pushing and good luck 🤗x

[VickySponge]

Thanks for your reassurance. I tried opthamology again- no one available to ansswer the phone and no facility for a message. i will try again ;later

[Grammy80]

My heart aches for the frustration and anxiety you must be feeling. You fight~!.. DorsetLady is so spot on. I personally had to fight for a diagnosis here in the states. You have symptoms that need to be explained. England is so far ahead of the States in GCA knowledge and awareness....for goodness sake, I had a whopper GCA flare with normal markers. 🤞🏻🤞🏻💞

[VickySponge]

I did manage to speak to opthamology outpatients. They confirmed the LETTER about my need for an appointment came today and they were just dealing with it. Why do they need to write letters in this day and age!! She promised to speak to a doctor and get back to me in in an hour. That was at 4pm . It is now 7pm UK time and I will not hear anything now.

[Fatsiajaponica in reply to VickySponge]

They were unsure what had caused my eye issues but eye hospital put me on 60mgs straight away just in case. I know how anxious all this makes you feel, so fearful that you may lose sight, it makes me want to shake them all for you and say 'wake up'. You are nearly there, have you thought to take 60 mgs yourself if you have enough? That may help reduce the anxiety? Obviously tell them that is what you are doing and why until there is confirmation that this is not GCA. I may get told off for this suggestion..............

[GivenUp24]

my whole face is numb and tingling. Mri showed nothing wrong with my neck. And it is associated with GCA.

[Numptybrain]

I really hope you get sorted soon, I’ve had blurred vision for months now but nothing anyone can do apart from eye gels and drops but you are a lot worse. Good luck

Take care

Wendy xx

[S4ndy]

Hi, have you tried calling the optician again? Ask if he can refer you to an emergency eye clinic. My optician did this and I was seen within 24 hours at an eye A&E. I had previously gone to the ordinary A&E where they sent me home and said someone would contact me in 24hrs. That didn't happen so that's when my optician stepped in. However mine was not GCA. My optician had seen damage to my cornea which was from the shingles virus. Hope you get an answer soon x

[VickySponge]

Managed to sort it and I have an appointment today at 2pm!!

[sidra1968]

I personally would take the 60 mg. I have personal experience with CRVO (husband) and there was zero pain or tingling..just suddenly his eye was like looking through fractured glass (he has had a very good recovery since). I'd take it, and then go from there..