Eye clinic

[Ellesmere321]

hi is there anyone with gca living in Shropshire would love to know what treatment you are receiving I am so frustrated with my care doctors did not realise I had gca till lost sight in one eye never see consultant once just an f1 help

[HeronNS]

I am so sorry to hear this. What treatment have you been given to preserve the sight in your remaining eye? It should be high dose prednisone (prednisolone) for a few weeks then a gradual rather lengthy taper to a lower dose.

[Ellesmere321 in reply to HeronNS]

I was on 14 tablets over Christmas am now down to one and half my treatment was moved to company who work at hospital over weekend should hve HD appointment thus week but as they r busybmy appointment is end may HD blood test last week but cannot find out the results I just wont to be sure everything is fine

[DorsetLady PMRGCAuk volunteer in reply to Ellesmere321]

Hi,

I lost my sight in right eye prior to diagnosis (late!) and was started on 80mg ( am assuming your 14 tablets were 5mg, thus making 70mg). That should have been enough to preserve the other eye. After two weeks when Ophthalmologist was sure mine was okay I was reduced to 60mg and then followed a slowish taper.

If you are down to 1 & 1/2 tablets - what dose is that? Surely not 7.5mg - if so that’s a suicudal reduction plan.

You really need to be under the care of a Rheumatologist, and you should be having regular blood tests, and getting the results.

Have a look at attached for more info

healthunlocked.com/pmrgcauk...

See this for groups - pmrgca.co.uk/groups/

There is a Shropshire contact

Good luck. Plus a bit more info might help

[Ellesmere321 in reply to DorsetLady]

thank u hv. Looked at these groups as soon as diagnosed

[Hidden]

I am so sorry to hear this... : (

[Jackoh]

You seem very much to have been left to your own devices and appear not to have been given much guidance or advice. Have a read of what DorsetLady has sent you and let us know how you get on.

[Ellesmere321 in reply to Jackoh]

thank u

[Ellesmere321 in reply to Jackoh]

Hi the first Doctor I saw at the emergency eye clinic gave me a reduction and appointment plan for the first two months but once I was transferred over to the main clinic under a consultant(who I never Saw) now one seemed to have a clue. I had to ask for blood test form. The last appointment which should have been this week (six weeks after the last), was put back to the end of may. What I really wonted to know is if there was any one in my area with gca so that I could find out which consultant they are under and which department.

All the other info I have seen on the web

[Jackoh]

There is a PMRGCA group in Shropshire I think. If you contacted the organisers I'm sure they would be able to advise.

[Ellesmere321 in reply to Jackoh]

yes will give them a try