Update on GCA query

[SanG55]

I have been to the local eye specialist which happens to be my optician. I saw a young optician who I have not seen before. He said he’d heard of GSA(!) and admitted to no expertise in the field. I said it may be better to wait for my usual optician who has knowledge of GCA, but he said he knew what to do! Results were, eye health looks fine, my sight has gone down a step - I had to ask for an explanation of what that meant - deteriorated slightly (since last test 3months ago) and going forward, if I have any more problems to go to A&E. That’s the short version, I felt so frustrated I was on the verge of tears as he repeated questions as if there had been no discussion earlier in the convo!

I have contacted GP and requested a referral to a rheumatologist and questioned my Prednisolone dose- we’ll see what comes back. Thank you all for your support, advice and wise words, I really appreciate it.

[DorsetLady PMRGCAuk volunteer]

Slight deterioration in sight may be due to high doses of Pred… it can affect some in that way… and obviously not enough to cause concern, or need new prescription [if you already wear spectacles].

Please let us know situation with referral to Rheumy… and Pred dose.

[SanG55 in reply to DorsetLady]

Thanks DL. Will keep you updated 😊

[PMRpro Ambassador]

Some of us dealt with the changes in vision by moving our specs up and down our noses - because it can change from day to day!

It can be very frustrating when we, as the patient, are part of the educational process for an inexperienced professional! We aren't well ourselves and also have only an imperfect knowledge.

But he has at least sent a message for the GP that this needs more care than they can offer.

[SanG55 in reply to PMRpro]

The request to GP was sent by me. Optician seemed adamant that any further problems, I go to A&E, but concerning as they are on list link for specialist eye clinic. Will keep you updated. It frustrates me, because Pred lowers my mood and I then struggle to find the motivation, energy or inclination - my head tells me one thing, but I can’t always put it into action😣. Will keep you updated.

[PMRpro Ambassador in reply to SanG55]

They are a specialist eye clinic but in the form of triage really, There are some things they can treat but also provide the exaamination to diagnose and send to the ED for further referral to specialists. Might be worth asking your usual guy what he would have done - my Scottish optician years ago did the examination, decided that yes, this was likely to be a, b or c and whether it needed the hospital 20 miles away. He rang them to pre-alert the eye department that a time critical diagnosis was on its way so they took over at the door of the ED and the patient didn't have to go through the normal wait for triage and to be seen.

I think all of us a bit like that - we have been through such a lot that a bit more feels like a mountain to climb.

[SanG55 in reply to PMRpro]

So true! I can’t remember if Pred had this negative effect on my mood before but I am certainly working hard not to slip into the doldrums! 😊

[SanG55]

Spoke to GP yesterday who has upped my Pred dose to 60mgs for two weeks and then I will have a f2f appointment with another GP (as he’s away). He will look into referral to a rheumatologist- not sure if he’s going to do it, but if not done by the time I have next appointment, I will push again. Thanks for your never ending support, as always 😊

[DorsetLady PMRGCAuk volunteer in reply to SanG55]

Thanks for update….hopefully things will settle for you, but 60mg is quite a hefty dose to cope with.

[PMRpro Ambassador in reply to SanG55]

Why on earth can they not arrange an emergency referral - after 2 weeks of 60mg there won't be many traces left.