Update : Day 5. On 50 mg now for a month. Damage... - PMRGCAuk

PMRGCAuk

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Update

alvertta
alvertta

Day 5. On 50 mg now for a month. Damage in right eye seems to have stopped at 50%. Doctors all think this should be stopped but no 100% guarantee.

On June 12 ESR WAS 15, CRP WAS 2.6.

On Monday ESR WAS 14, CRP WAS 7. Had another blood test yesterday.

ESR WAS 22. CRP WAS 0.9.

Strange. Looking to Rheumatologist for explanation. Going to start weekly blood tests. Fingers crossed I am Done w damage. Tuesday I have Field of Vision Test. Follow up w Opthomologist on August 11. Nervous.

19 Replies
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What a relief that the damage to your eye seems to have halted. How quick and efficient you and your doctors have been! I hope all your tests continue to reassure you ( I never feel that I get the peripheral vision one right). Not sure what is going on with your bloods except anything can have an impact on them, even the sniffles. Good luck with the Opthalmologist! Well done for the way you are weathering this storm. Keep letting us know! 🌺

Off to Zzzz. Maybe.

Fingers crossed the damage has been halted. It does sound like it. Your blood tests less than a month before this crisis were normal. Did you have any worrying symptoms leading up to the sight loss or was it a sudden thing? Did they tell you the CRP and ESR when you presented with partial loss of vision? I never know how much reliance we can put on monthly or quarterly blood tests, or symptoms, or lack of them for that matter. I was remiss in not getting regular frequent blood tests, and after a recent blood test last month was shocked at the very high CRP and ESR with only a slight intermittent headache. I can see that your ongoing weekly blood tests will be a comfort to you.

alvertta
alvertta in reply to pinks33

Blood tests do not seem to indicate true inflammation. None of my results,even on Monday in hospital, were terrible. I had no other symptoms. Scary.

Carriemetz
Carriemetz in reply to alvertta

It is scary. Like leaning on a banister that isn't there. In the dark. 😳 Thinking of u. Carrie x

alvertta
alvertta in reply to Carriemetz

Yup. I love certainty. This is not certainty. Drat.

There may not be one, the most important thing is thankfully it’s stopped. Enjoy that sleep, there is nothing like it. 🥂🌹

alvertta
alvertta in reply to EdithWales

Great sleep.

Scary indeed. We always think we can tame the beast by reacting to raised blood markers and recognisable symptoms. But your story reminds us we are not always in control. I wonder if your doctors will be able to give you some answers?

alvertta
alvertta in reply to pinks33

So far they are as mystified as I am. My rheumatologist was gobsmacked. The Opthomologist said he would have not been alarmed by the results. But obviously something was going on long before I saw it in my eye. Scary.

PMRpro
PMRproAmbassador in reply to alvertta

There is a form of GCA they call occult GCA - no symptoms at all until they wake up with sight loss. Have they done scans to look for stroke? A clot in the wrong place could do it too - GCA isn't the only cause.

alvertta
alvertta in reply to PMRpro

I will ask. In October 2018 I had stroke, heart, etc etc tested. Guess it’s time for another round. Thanks.

PMRpro
PMRproAmbassador in reply to alvertta

GCA visual loss is effectively a stroke - just a very localised one

alvertta
alvertta in reply to PMRpro

My rheumatologist told me about a case she had last month. 60 year old male. Lost eye sight in one eye. Did not run off to emerg. Next day lost second eye. Off to emerg. Had GCA. no other symptoms. No headaches. No locked jaw. No flashing lights. How sad.

PMRpro
PMRproAmbassador in reply to alvertta

It just doesn't bear thinking about - that is what drives Prof Dasgupta.

Constance13
Constance13 in reply to alvertta

Wow! How AWFUL. No bold up at all!👎

Carriemetz
Carriemetz in reply to alvertta

So very sad.

Glad to hear things have stabilized so far...hoping the prednisone will work its magic and be kind to you. Think kayaking, swimming - all things positive -to help you get through this challenging time.

Thank you.

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