Back to the worrying stage

Well, after seeing my rheumatologist today and being told the pain behind the eye and blurry vision should not be happening on 40mg Pred so I have to have brain scan, more blood tests, another appointment with the ophthalmologist, I am now thinking brain tumour although nothing's been mentioned about it but somehow I felt less worried when I thought they knew what was wrong with me.

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  • are they not the signs for GCA??????

    Hope they sort you soon.

  • Sue8 they are the symptoms of GCA and I was diagnosed with that, and PMR back in April and have been treated for it ever since but the concern is that some of my symptoms are not consistent with the treatment so they are investigating whether I have another condition producing similar symptoms.

  • oh I see.

  • Greyowl

    I can understand how worrying it must be following your rheumy's comments. However, I did continue to have blurry vision following my GCA diagnosis whilst reducing down through the doses and at the time my rheumy advised me that it was a side effect of the steroids. It continued to bother me particularly when watching tv and driving. Finally, I was advised by my optician that I now needed distance glasses for driving etc (I had only needed glasses for reading previously). As soon as I got the new glasses, it made a tremendous difference and solved the blurriness in the troubled eye - I can only assume that GCA caused sudden deterioration of vision in the eye affected.

    Good luck with the scan.

  • Grey Owl, pain behind eye and blurry vision, I would not be waiting for a brain scan. I started on 60mg of pred. Others have been given up to 80mg and also if that has not worked hospitalized for intravenous steroids. Sight is important. Read the British Society of Rheumatolgosts Guidelines on Diagnosis & Treatment for GCA. I would have told the Rhuemy I was not a happy bunny being sent away with blurry vision and pain in eye. If anything worsens, head off to the nearest A&E and tell them what is happening and that you are worred. By the way, have you had a bi-opsy on the temporal artery?

  • Smoky, I had a message left on my voicemail from the rheumatologist just after 5 today to say the blood tests showed no raised inflammatory markers which, she says, is very good news and she said just to keep the pred at 40mg. There are other factors with my vision like double vision which she wants an ophthalmologist to check out as she wants to make sure they didn't miss anything when I first had a check at the Eye Hospital. I have al lot of other symptoms not normally seen with PMRGCA which is her reason for wanting to dot every 'i' and cross every 't'.

    I had been on steroids for around 6 weeks before I had the first appointment at the hospital so there was no point in a biopsy as it probably would have showed negative anyway.

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