Sight Loss query

[Nagswoman]

Me again. Thanks all for your replies to my other post. Very useful. We are both well now. Today's theoretical question is from the other half.In these days of having to wait anything up to, or even above, 9 hours for an ambulance, if someone suddenly loses their sight, and has preds available, how much preds should the person take until they can get into hospital? Or is that a non-starter? He is not convinced that a triage person, at a walk in, has the skills to assess a GCA/potentially GCA person either. Even now local medics call it arthritis. I had said to him that I was so lucky 9 years ago when I became very ill, after 6 years of them faffing about, that I had not lost my sight. At that time, I had a bottle of 1000 x 5mg uncoated preds that were left over from having to treat one of my horses with 140 tabs a day.

[DorsetLady PMRGCAuk volunteer]

Usual start dose for GCA and sight loss is at least 60mg….mine was 80mg, although very often an IV course of1000mg for 3 days

This excerpt from Medscape forum -

Few studies exist regarding dosing protocols for corticosteroids in GCA. It is generally agreed that most patients with suspected GCA should be started on oral prednisone 40-60 mg/day, with a temporal artery biopsy performed within 1 week. Prednisone doses of 80-100 mg/day have been suggested for patients with visual or neurologic symptoms of GCA. Follow-up care within 72 hours after starting therapy should be arranged.

Alternatively, patients with acute visual changes from GCA can be started on intravenous (IV) methylprednisolone at a dose of 1,000 mg daily for 3 days. Limited data suggest that initial high-dose IV corticosteroid treatment (eg, methylprednisolone, 15 mg/kg of ideal body weight/day) may improve rates of sustained remission. However, further study is warranted before this is routinely practiced.

Hopefully you don’t need to go down that path…

[Nagswoman in reply to DorsetLady]

Thanks. Not me. I have excellent care. As I said, it was hypothetical due to the state of things now. Pity people who may have sudden blindness with the delays.

[DorsetLady PMRGCAuk volunteer in reply to Nagswoman]

Fine…but no need to feel pity for me…I manage very well with monocular sight 😊

[Nagswoman in reply to DorsetLady]

Sorry. Didn't mean it to sound bad. GCA got all of me south of my ears. I was lucky. Himself has met a couple of people who were not able to get dealt with quick enough hence the question.

[DorsetLady PMRGCAuk volunteer in reply to Nagswoman]

Okay and understood,,

[Angelsmummy]

Morning N,rushed into hospital ,believe it was a high dose of pred orally,,can’t really remember ,then put on IV drips over course of 2 days.Left hospital after 3 days with a starting dose of 60 mg then had to start tapering in time.I too lost sight in left eye

[Angelsmummy]

sorry,should have said “ a continuing dose of 60 mg,” !xx😜💐

[PMRpro Ambassador]

What used to be said to us by doctors in the early days of the charity was if you had ANY visual symptoms to take a single dose of 60mg pred and seek medical advice immediately. At that time, several rheumies told patients, especially GCA patients, to always keep a backup stash of 60mg pred for such a purpose and issued a suitable prescription. You need to check it at intervals to be sure it is still within the expiry date and replace it.

You can also call 111 - they would get a doctor to call back soon for an emergency like that. And you can get someone to drive you to the ED - just don't drive yourself obviously.

[Nagswoman in reply to PMRpro]

Thank you PMRPro. I read it out to him. As I said to DorsetLady, it is not about me. He just asked the question. Even 111 failed recently with a relative and did not call back for over 24 hours by which time we had got him into hospital. I was advised, years ago, long before GCA hit, to keep an emergency pack of roids for asthma. This knowledge of keeping 60mg in abeyance could help others who may have tapered somewhat, to give any eye issues an immediate hit whilst trying to get further medical help, in these days of overcrowded NHS. Hope that makes sense.

[PMRpro Ambassador in reply to Nagswoman]

111 is only as good as the number of staff - but in a real emergency I'd have backed up with a reminder and even a 999 call and asking their advice. There are always clinicians on duty at the 999 call centres to give advice.