conflicting opinions …

[KC6755]

Hi All

I have had a weird headache and some blurry eye for the past few days . Had bloods done ESR was normal , Rheumy has prescribed 30mg of pred for 3 weeks , 20mg for 3 weeks , 10 mg for 3 weeks etc. and referred me to an eye hospital to check out behind my eyes . I also have an ultrasound booked tomorrow morning.

Eye doctor and eye consultatant have both said no GCA present and said I shouldn’t have to stay on such high doses of pred for so long . In their opinion if there is no GCA I should be able to return to my usual 5mg of pred that I am currently on for the PMR. They feel that the PMR has caused this episode .

It is so frustrating getting conflicting information from medical professionals, any advice from anyone would be fab … thank you

[SheffieldJane]

I do sympathise with your worry. Has another doctor said something that conflicts with “ no GCA”?

They do seem to have been thorough, although a bit slow if it was an emergency. Pred can cause blurry vision and I had daily dull headaches, like a cotton wool head with PMR and Pred. I think I might be content with that level of care unless anything else joins the symptom picture.

[KC6755 in reply to SheffieldJane]

hi Sheffield Jane

Thank you for your reply . Rheumy said he was unsure and prescribed the 30mg as a precaution, the ophthalmic doc seemed pretty sure there was “ no optical involvement “ and then asked the biopsy consultant to comment who said it not necessary to perform a biopsy as it wouldn’t be accurate as I’d been taking pred . Also said at 55 it was unlikely to be GCA.

My main worry is that I’m potentially taking higher dose pred than needed if no GCA. I’ve happily been on 5mg .

I guess I’m looking for a definite diagnosis. Should I challenge the Rheumy or just accept his decision ? if my scan tomorrow shows anything , then I understand the need for the increased steroids …..

[SheffieldJane in reply to KC6755]

The Biopsy Consultant is wrong about your age being a contrary factor to a GCA diagnosis. He ought to know better with his specialism, it beggars belief tbh. We have had much younger people, I remember a woman of 46, but the age is usually 50+. Ancient medical papers used to say 70 +. He needs a refresher course!

Your Rheumie is being appropriately cautious. GCA doesn’t always effect the eyes - mine hasn’t so far, touch wood etc. All you can do is follow the Rheumatologist’ reduction plan and be alert for worsening GCA symptoms. You may need 7 mgs because you were becoming symptomatic and are entering the stage, where your body feels the cortisol it needs, diminishing and begins to protest.

[PMRpro Ambassador in reply to KC6755]

I'd side with the rheumy and the pred - especially if the symptoms have improved since the higher dose of pred.

There is no definitive answer and the eye people are at least partly wrong - 55 is by no means too young for GCA and just because there is no sign of AION in the eye doesn't entirely rule out GCA.

my.clevelandclinic.org/heal....

[KC6755 in reply to PMRpro]

hi there

Thank you for your reply . Had an Ultra sound yesterday , was advised no inflammation although questioned if I had been taking steroids .

So this is now unlikely GCA from both ophthalmologist and ultrasound scan .

I am continuing with 30mg of pred until I hear from Rheumy . ( which he said could be anything up to 3 months ! As clinics are so busy )

Still have mild headache behind left eye , no other GCA symptoms apart from deadly fatigue and some neck and shoulder aches which I’m believing is a PMR flare .

I am also having a bone density scan today…

I am questioning a slow taper if the high dose pred isn’t necessary … but nervous to go against Rheumatologist plan …

Any help or suggestions would be very welcome. Thank you

[DorsetLady PMRGCAuk volunteer in reply to KC6755]

Do you have a contact number for Rheumy help desk? You really need advice regarding the 30mg dose - you don’t want/need to stay on it for months if you don’t have GCA.

[KC6755 in reply to DorsetLady]

thank you DorsetLady . I feel awkward questioning the dose but likewise don’t want to be taking it unnecessarily.

I don’t have a help desk number .

[DorsetLady PMRGCAuk volunteer in reply to KC6755]

can you look on hospital website and find the rheumatologist’s secretary number?

[KC6755 in reply to DorsetLady]

when I asked the rheumatologist who saw me briefly whilst at A&E if I could speak to anyone before his appointment came through he said no I had to wait , but I’m going to call today and see what I can do .. thank you for replying, I don’t feel so alone with this !

[PMRpro Ambassador in reply to KC6755]

Ring the hospital switchboard and ask to be put through to rheumatology. You should be able to speak to the duty registrar (or whatever they are called these days) and if you can't it merits a complaint. Any patient with query GCA needs a contact.

If you are at the high dose for less than 2 weeks you can drop back really quickly - you'll notice it but it will do no real harm. If it is longer then you can drop to 10mg very quickly but go a bit slower for the last bit.

[KC6755 in reply to PMRpro]

thank you , I will give it a go , your help is very much appreciated