Today is Wednesday 18th October 2017.
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GCA

MY STORY

In early January 2011 I became aware of a constant quite mild ache behind my right ear and upwards, settling above my right eye. It was only upon mentioning to a cousin, who is a nurse, of my intention to visit an optician for an eye test and confirming the symptoms only occurred down one side, that I was persuaded to visit our GP.

Following examination around head area and blood test results apparently showing inflammation, GP diagnosed Temporal Arteritis which I had never heard of but was promptly put on high dose of steroids and referred for a biopsy which, due to my having been on the steroids for seven days, was inconclusive. The difficulty in obtaining a conclusive diagnosis in these circumstances is accepted as it is considered essential to prescribe steroids immediately the problem is suspected. The gradual easing of the aches, (itching in right ear and bleeding gums, both being described as very early signs of symptoms requiring attention), was sufficient evidence they were on the right track. My right ear was a nightmare causing loss of sleep due to itching and, despite various treatments with creams, antibiotics etc., continued until steroids provided much welcome relief.

I coped fairly well with the medication until being further diagnosed with Under-Active Thyroid and put on 50mg daily of Thyroxine resulting in my becoming totally disorientated. I was unable to tell the time of day, waking up at 4am thinking it was 4pm and once was standing outside waiting for a bus at 2am; believing it to be 2pm. It was the most dreadful experience of my life being convinced I was losing my “marbles” but thankfully, following GP contacting Consultant by telephone who advised I was suffering from “Steroid Psychosis” due to two strong medications clashing, was advised to take Thyroxine first thing in morning, waiting at least one hour before taking steroids – following this advice for seven days gave me back my normal life.

My position was particularly difficult living on the beautiful but remote Island of Barra and was grateful for the reassurance I received from PMR GCA Scotland and Jean Miller in particular.

I am now coping well and would be more than happy to communicate with anyone who is at the early stage of this lengthy but manageable passage. Remember life can still be enjoyable and worthwhile – there are many of us testament to that.

Footnote
I was eventually referred to a Consultant Rheumatologist in Glasgow who was totally uninterested with his only contribution being to reduce from 5mg to 4mg steroids. Concerned whether that was sufficient to save my sight I spoke to a doctor friend who confirmed that I was entitled to continue with my 5mg maintenance programme if that was what I was comfortable with. The lesson in this is to ensure we insist on receiving the best care available for our particular problems.

If any reader would like to contact the author about her specific experience, please contact us at info.scotland@pmrandgca.org.uk (or the HelpLine 0300 777 5090) and we will forward your details to her.