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29 January 2018
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My Story

Chris Y

I was diagnosed with PMR in January 2005 (age 55) and started on 15mg prednisolone/day. My GP tried to reduce the dose too quickly and the symptoms returned.

I requested a referral to a rheumatololgy consultant locally, who I knew had expertise in the management of PMR. Under her guidance a slow reduction of 1mg a month began although she warned me that in “younger” patients, PMR often ran a longer, more aggressive course. It was a slower than hoped for reduction, and I was “stuck” for a long time at 5mg, but by March 2010 I was down to 3mg daily and feeling better than I had for a long time.

In June 2010 I began to feel increasingly tired and “not quite right” - my ESR and CRP had crept up above the normal range but not to a worrying level. By August I was breathless on exertion and experiencing very fast heart rates even at rest; night sweats; dry cough; flitting joint pains and feeling generally unwell and very tired. At this time my inflammatory markers were highly elevated to a worrying level.

It took another 3 months and a PET CT scan to diagnose an atypical presentation of GCA without temporal artery involvement. All my major arteries were affected. At the beginning of December 2010, I was given a large intramuscular dose of the prednisolone equivalent and then started on 40mg pred daily plus azathioprine 100mg daily.

I found the high dose pred difficult to cope with as I didn't sleep well and also often had a heart rate of 100 which seemed to be triggered after eating. This was controlled well with low doses of propanolol. As I got down to 25mg pred in February (reducing by 5mg every two weeks), the sleep and heart rate settled and I started to feel better.

In April 2011, I began to feel overwhelmingly tired and unwell most of the day. The azathioprine was stopped as the inflammatory markers were not elevated and over a period of 4 weeks I gradually felt better. My consultant then advised weekly methotrexate (mtx) as an alternative to the daily azathioprine, to be able to reduce the pred levels more quickly. I am two weeks into this new regime (pred at 15 mg daily) and after the first dose of mtx I experienced 24 hours of fatigue, dry mouth and nausea but this was much less after the second dose a week later. It helped tremendously to be able to talk to Catie P who had been taking methotrexate for some time and to hear her experience of it. As I still work two days a week, I now know I have to time the weekly mtx dose so that the following day I have nothing planned and can have a quiet day if I need to.

I have the found the website extremely helpful – just knowing that others have had similar experiences with the condition and the treatment is enormously reassuring. Managing GCA has been a big learning curve and I have had to readjust my life to take account of the fatigue which continues to be one of the biggest features for me. I try not to “fight it” but to pace myself sensibly to keep as fit as I can while allowing my body to try and stabilise itself.

Chris Y

 

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