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My Story

Mavis - A Journey with GCA. Diagnosed February 2007 - In Remission December 2011.

I am writing this after living with GCA since February 2007.

I felt puzzled when diagnosed with GCA. I had been feeling a bit off and suffering from intermittent headaches and toothache, but I put it down to doing too much and ignored what was going on. The headaches became worse and every bone in my face was aching, I could not chew and wanted to pull the front of my face off. My eyes hated the light.

I visited my GP and he decided to refer to me for a scan. However I had to go back to him within a week as I was worse than ever. I remembered my Mother had had PMR and the symptoms seemed similar. I discussed this with the GP and he ordered a blood test immediately before I left the surgery.

My GP rang next day at 7.45am and asked me to come in straightaway. By 10.30pm I was on a dose of 60mg and within 6 hours all the symptoms had disappeared. I could see again, the headache went away and so did all the other aches and pains. Marvellous.

I was back at the GPs surgery on the Monday at 9am and it was then that they told me how close I had come to losing my sight and that I had GCA but it needed to be confirmed, I saw a Consultant Rheumatologist on the Tuesday and an Optician on the Wednesday. A biopsy had been booked for Friday, but when I went it was decided it was too late, as I had been on steroids for over 5 days and at 60mg per day. So a medical diagnosis sufficed

I broke down on the Friday - a week on a roller coaster had taken its toll. By the way, I call it Giant thingy and polywotsit. Family and Friends were bewildered they had never heard of either PMR or GCA. I suppose in a way I was so grateful that my sight had been saved that the complications that have followed pale into insignificance when I imagine what could have happened. I could be blind. There is no reversal.

The steroid dosage was reduced very quickly down to 40mg then gradually down to 20mg by November 2007.

Problems have arisen with the side effects of the steroids, to the stage where I am unable to walk more than two car lengths because of consistent and sometimes excruciating back pain, now have a Blue Badge Parking Disc , Attendance Allowance, weight gain (which does not help), peach fuzz and triple chins.

My GP insisted that the Rheumatologist sent me for a bone scan (after six months of being on a high dose of steroids). He has also worked out a programme for the reduction of steroids ongoing until September 2009. This reduction plan depended on the symptoms of GCA not re-occurring.

Following the reduction programme, I reduced down to 7.5mg per day and as the dose came down, the peach fuzz and moon face disappeared, I lost half a stone and the back pain reduced. However the symptoms came back and I had to increase the dose back up. Once the ‘flare-up’ as it is called settled down, back to the reduction programme. This time I reduced down to 10mg, but luck was not with me and a second flare occurred.

Currently, May 2009, I am now down to 10mg and back on the reduction programme. Thereafter it is reduced my 1mg per month until I reach 5mg, then three monthly reduction plan, ending up with 1mg per day. It may be that I shall have to take 1mg per day for the rest of my life - but we are all keeping our fingers crossed on that one.

Every article that I have read insists that a slow reduction of steroids is the best way of coming off them completely. I know people get impatient as they hate the side effects, especially the weight gain - but I don't mind - I do not want to be blind and am willing to put up with every other side effect going.

Everyone is in the dark - including the Medical Profession, as there is no known cause and no known cure.

As far as I can gather, steroids make your own production system of cortisol/cortisone shut down and that is what has caused the back pain. As I reduced the back pain eased. Steroid tablets stop the production in your own glands and it can time for them to ‘kick in’ again.

I see my GP monthly for a blood test and we check the CRP (Creatine Re-active Protein) rate.

I carry my blue steroid card wherever I go. In fact I have three or four in different handbags and one in the car. I still get tired and feel lethargic, some days my head is fuzzy and I just have to retreat - but I realise this is all side-effects and I just have to get on with it as best I can or as another sufferer puts it 'go with the flow'. Life is not a rehearsal, you only get one shot at it, so you have to try and get the best out of the hand you are dealt.
Everyone is in the dark - including the Medical Profession, as there is no known cause and no known cure.

We are just ordinary people who happened to get Giant thingy or Polywhatsit and who were lucky enough to meet other people on the Internet. Without them I would have been driven up the wall.

Meanwhile, I live in hope.

I am writing this on 20 November 2011.

Four years and nine months from when I first wrote my story which I ended with the line ‘Meanwhile, I live in hope.’ The hope has come true and on Friday I received a letter from my Rheumatologist that the scan I had, revealed that I no longer had recurrent Temporal Arteritis. So, remission, finally!

It will probably take about a year for the glands, side effects to wear off and also to lose the weight gained. I will have to carry the blue steroid card or wear my bracelet for two years. And always be aware of the symptoms of GCA. Until we have cause and cure, I must be alert.

I started out on this journey, knowing nothing, there were only two Support Groups in the UK. Now were have a National Charity, Scotland and the North East have their own Charities and we are all working together. We have more support groups and the profile of both PMR and GCA has been raised The scan I had was not available 4 years ago, indeed the trial was only started in March 2010 (visit our Research section on this site. Research is on the increase and one day we will get there.

In the meantime, I look forward to the future with hope.

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