Mary63

How very scary for you. I would go to A and E if I were you. I am not a GCA sufferer myself, but many of the symptoms you mention seem to suggest it. Or dial 111 if you can’t get to A and E. Do you have anybody who can take you? Don’t risk your eyesight.

merril in reply to Mary63

Thank you Mary63. Appreciate your concern. Will discuss these symptoms with GP tomorrow when I have a phone call with her. 👍

Reply (0)Report

SheffieldJane

This is no ramble but it is a very concerning set of symptoms. I even wondered about COVID 19 - have you had a test?I wouldn’t be tapering with all these symptoms - quite the reverse. If you can’t get appropriate support from your Rheumatologist, then I would seek emergency investigations.

Blurred vision is quite common on Pred but you are right to be cautious, together with your head pain and ear symptoms. Good luck!

merril in reply to SheffieldJane

Hi SJ thank you for your advice. Am due to have a phone call from GP in am, but of course she was very much against me having steroids and I am having to pay privately for the rheumie's advice. I like him but not sure how much he knows because I had to seek here on advice to taper. Use the slowest taper(for 7 weeks ) when I see rheumie again. Have had the first injection of Phizer.

Reply (0)Report

DorsetLadyPMRGCAuk volunteer

Hi,For it to come on that quickly I do wonder if it’s something other than PMR....

...as others have suggested could be GCA, but also COVID, even though you’ve had your first vaccine.

Once you’ve spoken to GP please let us know what’s next move, but obviously if symptoms worsen then A&E, or 111, although weekdays they are apt to refer to your own GP.

merril in reply to DorsetLady

Hi DL..so many things to remember from my phone call with GP. Emergency bloods to be done in 48hours. Go back immediately to 7.5mgs pred, dexa scan to be arranged, secure an earlier appointment with rheumy. swap ami for zop. copy letter now in my email of rheumi's letter to her. Ami reaction on AF!

Will keep you posted

Reply (1)Report

PMRproAmbassador

I doubt it is PMR that quickly - but I share everyone else's concerns. You are not well - and it something that needs investigation. A UTI could do all that without you being aware of it otherwise.

No chance of another GP? One who obviously disapproves of pred is hardly the right person to manage a patient on it.

merril in reply to PMRpro

Hi PMRpro.... have now read rheumi's letters to GP. Here is an extract from a paragraph. I have decided to reduce steroids from Pre 7.5mgs daily to 7.5mgs alternating with 5mgs daily for two weeks then reduce dose further to 5mgs daily.

In the absence of receiving a copy of this until now (4 weeks) I had already begun DL's slow taper. My brain fog can't take it all in, but GP has helped and sprung into action, as you will see from my reply to DL regarding GP's actions

Reply (0)Report

PMRproAmbassador in reply to merril

What's the hurry? 1mg at a time below 10mg ...

Reply (0)Report

merril in reply to PMRpro

PMRpro...who knows, and I certainly don't! Not at the moment with my head in so much pain. Thank goodness it's paroxysmal and not constant, but may be why the GP has arranged emergency blood tests for tomorrow.

Reply (0)Report

PMRproAmbassador in reply to merril

Hope they sort you out quickly - but if you get worse, off toA&E

Reply (0)Report