Why such a deterioration in my symptoms?

[merril]

I posted on my second and last visit visit to rheumi about how very well I felt. The same night that all changed when my legs felt like concrete and I wanted to get into bed fully clothed I was so tired. Since then I am on my 4th week of tapering from 7.5 of pred aiming to taper very slowly to 7mgs for seven weeks when I see rheumi again. However, i have been experiencing sharp pains across my head on right side, pain in my rt ear and tinnitus. runny nos e and eyes, and blurring and unable to see properly even with my new glasses. I seem unable to make sense of any of this but am concerned about my change in sight. Physio thought I looked better last Friday and said my walking and balance had improved. I agreed with him then, but now my legs are wobbly. Should add that the urologist phoned to say my kidney stone had inceased in size and he was keeping me under review. talked about sepsis and suggested I speak to GP about urine sample.

Sorry about the rambling it has taken me ages to correct all the mistakes while typing this.

[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. 👍

[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.

[DorsetLady PMRGCAuk 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

[PMRpro Ambassador]

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

[PMRpro Ambassador in reply to merril]

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

[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.

[PMRpro Ambassador in reply to merril]

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