GCA concern

[jaycee444]

Was diagnosed with PMR in April - started on 15 mg Prednisolone and slowly tapered till I got to 11mg and PMR symptoms started to creep back in so back to 12 mg which definately helped. I had had problems with blurry vision (difficulty focusing) even before PMR diagnosis and have had 3 different prescriptions for my bifocals in the past 12 months and after the latest which again made no difference at all I gave up as Spescavers are telling me its probably cataract problem (which isnt in their view ready to operate on). However at the same time that my problems re-emerged with PMR I started to get some vague facial discomfort and an occasional very short but not intense temporal headache.

Over the past couple of weeks my eyes definately got worse and even watching television was becoming a chore due to focus problem plus I was having a bit of jaw pain when eating my evening meal. No headache as such but my discomfort (not pain) where my specs touch the side of my head. Saw my Dr on Monday - she is marvellous and was on to it straight away. She sent off a fast track to the hospital and put my Pred up to 40 mg in the meantime. I saw the doctor at Rheumatology yesterday (just over 24 hours) who says yes there are some red flags so would I stay on for the afternoon and see the eye team? Agreed I would wait but after a while the Dr informed me that she could not get hold of the right department???? and so she would make an urgent request and I would hear from them. In the meantime she scheduled a Temporal Artery Ultrasound for tomorrow.

I have now heard from the Eye Department who have given me an appointment for Friday first thing.

My concern is that as I have been on steroids for quite a while and will have been on 40mg for 4 days by time eye exam done will that not affect the readings? Rheumatologist did say often a false negative with the ultrasound but it is obviously the eye exam that I need to be re-assured about.

Throughout all of this my Inflammatory markers have always been normal and I cannot say that Ive had any great temporal pain - occasionally intense but only lasting a few minutes so I am of course hoping that GCA is not the problem.

PS. not sure why the writing on my post changed to italics half way through. Must have pressed something but not sure what. I blame the Pred

[DorsetLady PMRGCAuk volunteer]

Hi,

Well good on the prompt action taken so far. The ultrasound may be well be compromised by the higher Pred levels, but it’s the symptoms that are the key, and as you say the eye consultation on Friday should give a better indication.

Please let up us know the outcome, and hope it’s not GCA - but at least something us being done.

[jaycee444 in reply to DorsetLady]

I guess is the eye exam that I’m hoping won’t be compromised by the Prednisolone.

[DorsetLady PMRGCAuk volunteer in reply to jaycee444]

Think they can still see any damage.

[jinasc]

Did the 40mg work? No pain, no intermittent jaw ache?

Did you mean, ultrasound and not a temporal biospy?

I had GCA and then the u/s sound at the end of five years..........the Tabul study has just ended and my local hospital had borrowed one and luckily one of the registrars knew how it worked. I was down to 2mg at the time result was 'no halo'.................so remission.

Both my Rheumys had been reluctant to stop the pred and intended to leave me on 2mg.

So I would imagine that the 'halo' if present would confirm the symptoms.

Ask and let us know if I have guessed correctly. Remember the symptoms over ride any negative result.

Hang on to that GP like glue. Putting you on 40mg and taking prompt action - brilliant. .

[jaycee444 in reply to jinasc]

Yes Rheumie did say ultrasound might not show anything because of the steroids. 40 mg have stopped the fascial/jaw discomfort but no change in focal problem

[Hidden in reply to jaycee444]

Hi jaycee, well done to you and the gp. I quite like the italics!

It's seems a good sign that the jaw pain etc reacted to pred in the sense it's a timely catch. You eyes could be the cataracts and I found I daren't commit to new glasses until I got down to 7mg when my blurry vision settled (PMR). Perhaps you can go on referral re cataracts once the diagnosis is "sorted".

I hope things settle for you and you feel okay., 🌻

[PMRpro Ambassador in reply to jaycee444]

At least the eye people will assess the likely cause of the blurred vision - even if it is cataracts. I think if this has been hatching for a time there may be signs on the optic nerve even after a few days of high dose pred. And let's face it - if the 11mg wasn't enough to manage the symptoms there must have been more going on.

[SnazzyD]

Funny, the italics changed the tone in my head to a bit more urgent. Pred monkeyed around with my focus and my optician said not to bother chasing the rainbow with different prescriptions until it settled which it did. You might be at an early stage but the tests, not invasive, are worth doing. Glad the doc is realistic about likely results and is taking note of red flags, the uncomfortable glasses is a classic.

[jaycee444]

Thank you everyone for your replies. You are all so helpful and it’s reassuring to know I can always talk to someone.

[Blearyeyed]

It's all been said , take care , relax as much as you can and good luck with the testsxx