A day in the life of the PMRGCAuk helpline

We thought you might like to see this 'report' Jennifer wrote of her busy day volunteering on the helpline last week. Just a little insight into some of the shared issues people are experiencing all the time.

“Your turn to take calls” says Kate, “It’s not too busy at the moment.”

First call comes in at 10-15 – a lady at the younger end of ‘maturity’, diagnosed a year ago in October with GCA, but progressing smoothly as prednisone dose is reduced. She would like an information pack, and was interested in the PMRGCA Symposium as she lived within travelling distance.

At 10-35 or thereabouts – a call asking had I seen the article in the October SAGA magazine: “The Killer Headache No-one has heard of”. No I hadn’t either seen or been expecting it, but I was very grateful to be made aware, and immediately after the call, I made sure by email that all groups and interested parties were also aware. The caller’s wife had lost her sight four years ago, through mis-diagnosis of GCA. (Eric Clark, the Journalist who wrote the article,has GCA and is a member of PMRGCAuk).

I had a coffee break at 11-0, during which time three 0300 messages were recorded on the answerphone. Coffee finished I returned the calls. The first was from a very agitated younger woman experiencing jaw pain, sweats, and some visual disfunction. Her GP suspected GCA telling her it was likely after further tests, and that she would be prescribed prednisolone. After some counselling, we arranged further contact , once diagnosis was confirmed.

Returned call number two was a quickie. A PMR sufferer requested an info pack and a steroid leaflet. We discussed ways of reducing the prednisolone dose, as it was tapering off.

A gentleman with a history of headaches was the next caller. Over a period of six weeks his headaches were now severe, and his vision was in his words ‘all over the place’. He’d been examined by an ophthalmologist, and had a brain scan, but no significant problems were found. He had seen the SAGA article and we both agreed that he should seek medical help immediately, taking the article on GCA with him.

I managed to get the third return call in before lunch. A welcome enquiry about where to send his sponsorship donation for my Carrots Walk!

Another caller needing counselling phoned in the afternoon. GCA had been recently diagnosed after the sudden loss of sight in one eye. The caller was very shocked, and was having a hard time on a high steroid dose. She had seen the SAGA article with our 0300 helpline number, and phoned.

Still the calls came in! A lady in her 70s with PMR was struggling with her condition after three relapses over two years requiring a return to high doses of prednisolone each time. She had not previously talked to anyone (apart from her GP) about her experiences, and she may well find more support through the regional group nearby.

And at the end of the day, a repeat call from a young woman in her 40s who was following up her previous call a month ago, when we had discussed her symptoms which seemed not to reflect the GP’s diagnosis of PMR. She now had an appointment with a rheumatologist, and wanted to check earlier points raised.

So then I wrote up all the calls, sent them off, plus a congratulatory letter to Eric Clark, writer of the SAGA article, and went to bed! Whew!

5 Replies

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  • Thank you all for the great job you do. Liz

  • We are all lucky to have you as you have so much knowledge and experience!

  • Hi Kate and Jennifer,

    as I have said many times before, your helplines kept me sane when I first developed PMR. It must have been very trying at times for many of you wonderful ladies listening to my never ending questions. All those answers which stuck, stayed there and got me through!

    Pats.

  • Thank you all so much for your wonderful site, and all the support you give. It would have been a very lonely, anxious old journey without you.

    Have found a possible substitute for Adcal-D3 - Yoplait yogurt Calin Calcium+Vit D3. I think Calin is the right spelling. It's a French product only available, as far as my research goes, at ASDA. I will email Sainsbury, Tesco etc to enquire whether they will be stocking it.

    Its better than taking another tablet but of course prescription Adcal will be cheaper than buying the yoghurt. Anyway, thought it was interesting.

  • Thanks for the insight into the work of the helpline. Just wanted to say thank goodness you are there for us. Your support, knowledge and insight into our many problems and queries is invaluable and without you there would be many confused, troubled and potentially suicidal people out here. Thanks agin to "guardian angels"

    Margaret

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