Feeling quite down

[Trish21]

Not sure if it's roid rage or pmr depression but I am feeling ghastly just now. Fatigue, woozy head, increase in migraine, jaw feeling tense, increase in vertigo, tiny white lights in eye line, loss of sense of humour. Trying to reduce pred every 3 weeks. Diagnosed November and started on 15mg, then increase to 40mg due to suspected gca, now dose is 9mg .need so advice please.

[jinasc]

You need to see a medic fast. The 9mg is not holding the GCA in check and you cannot delay in seeking medical attention................your sight is precious and if this means a visit to A&E or a call to 111 do it now.

[Trish21 in reply to jinasc]

I had a biopsy that was negative for gca

[piglette in reply to Trish21]

It could be a false negative, a lot of people with GCA have negative biopsies.

[DorsetLady PMRGCAuk volunteer in reply to Trish21]

That doesn’t mean you don’t have GCA, it just means the small amount if artery did not show any GCA cells, but they can be in other blood vessels.

My temporal artery - which is the artery tested, had no inflammation in it, but my ophthalmic artery which leads to the optic nerve certainly did!

Symptoms are the key - first, last and always!

Please get yourself checked ASAP.

[Hidden]

Please seek help straightaway. 9.5mg is obviously not enough and you need to ensure your sight is safe. The earlier in the day you get to a and e the better on Saturdays.

[Trish21 in reply to Hidden]

I had a biopsy that was negative for gca

[Soraya_PMR]

Tiny white lights => A&E fast

Don’t delay.

[Trish21 in reply to Soraya_PMR]

I have no other symptoms of gca, biopsy was clear

[Hidden in reply to Trish21]

Please see this. Up to 20%ish of patients with GCA had negative biopsy.

ard.bmj.com/content/77/Supp...

[Soraya_PMR in reply to Trish21]

No other symptoms? But you wrote this: ‘Fatigue, woozy head, increase in migraine, jaw feeling tense, increase in vertigo,’

Each and everyone of those might be GCA brewing.

[SnazzyD]

If it was me I’d be off to A&E

[Trish21 in reply to SnazzyD]

I'm trying hard not to worry

[SnazzyD in reply to Trish21]

Well, a trip to a doc will either stop the worry because it’s not IT or because you’ve averted a full on flare. My biopsy was negative and my inflammatory markers were within normal limits yet my eyesight was shutting down as I sat in A&E. Better to feel a bit of a twit than be blind.

[HeronNS]

Agreed. The tiny white lights might be "only" connected to migraine, but could be a sign of much more serious complications of GCA, so I hope by the time you are reading this you have already been properly checked.

[Trish21 in reply to HeronNS]

Thanks for the response

[PMRpro Ambassador]

Go to A&E and get checked out properly. You have all the signs of a relapse.

I don't CARE you had a negative biopsy: in the presence of GCA symptoms, all a negative biopsy means is that they didn't find what they were looking for, the giant cells or other signs of inflammation. There are a lot of reasons why that happens including that the GCA isn't affecting that artery or section of artery, what are called skip lesions, poor technique by the surgeon or the pathologist.

You say you had no other GCA symptoms - if that is so, why did they do a biopsy? They don't do them for fun.

[Trish21 in reply to PMRpro]

I don't have scalp tenderness, but have developed jaw pain as if I have clenched my teeth for a long time. I have a headache behind the eyes, I am going to walk in centre later

[PMRpro Ambassador in reply to Trish21]

Sooner rather than later please. I, and others on this thread, are greatly concerned you are risking your sight. When it is gone, it s gone. No road back. Ask DorsetLady. That is why we spend our days, nights and weekends here. In the hope of preventing more cases.

[Trish21 in reply to PMRpro]

Thanks for the advice

[Hidden in reply to Trish21]

Trish, not everyone has scalp tenderness. But I am so glad you are doing something. I have PMR but have been to walk in 2 or 3 times and the opticians over the first couple of years because of jaw pain and blurry vision. It's always worth getting these things checked. 🌻

[jinasc]

Trish, I don't want to say this, but once you lose total or partial vision it is gone forever.

Do as other the others have said, please.