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Vol 274 No 7355 p790
25 June 2005

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Off the record

The need for Cox-2 inhibitors for ankylosing spondylitis

Off the record series



I have ankylosing spondylitis and I was taking Vioxx until it was withdrawn last autumn. I have taken ibuprofen and diclofenac and I am currently taking etoricoxib. I have a running argument with my GP about his responsibility for prescribing a drug which is disapproved of by the primary care trust. My consultant asks my GP to prescribe a drug which he himself would not be allowed to prescribe because his hospital trust will not allow it onto their formulary.
My point is that the National Institute for Health and Clinical Excellence — and others — who write the rules on prescribing these drugs clearly do not have to take them. If they did they would know the difference between non-steroidal anti-inflammatory drugs and cyclo-oxygenase 2 inhibitors.
Many AS patients have the same experience as I have over diagnosis — because AS is difficult to diagnose I had a period of 10 years of pain and lethargy without treatment. A rheumatologist diagnosed my condition in 1996. Subsequently I have been able to use a combination of drug therapy and physiotherapy to control the disease.
The worst part of AS is not the pain; it is the deep, soul-gnawing lethargy and tiredness that it brings. It kills your ability to get moving and live your life. I thought I had got used to the change from being healthy, before the disease started when I was 22 years old, to my condition now at the age of 44, but I do not think you ever get used to trying to do everything while being constantly held back by energy-sapping fatigue.

While I was taking Vioxx, from May 2000 until October 2004, I felt my energy coming back. I had more vitality and motivation. A day spent at the dispensary bench no longer felt like a lifetime. My old get-up-and-go had come back. This helped me get a new job, get into a relationship and start enjoying life again. This effect of the COX-2s just does not happen with traditional NSAIDs.
Diclofenac kills the pain but you are left feeling tired and before each fresh dose any beneficial effects have worn off. With COX-2s the lethargy is lifted from one dose for more than 24 hours. This allows me to do more exercise, more physiotherapy, and to enjoy the beneficial effects of
physiotherapy for longer after each session.
In short, the improvement in quality of life that COX-2s brings to me and people like me are huge. I just wish this was factored into decisions made by people in medicines management when they make the blanket ruling to avoid COX-2s, whatever the clinical situation. Somewhere along the line the doctor stopped being able to treat the patient, and now the budget managers get to do it — even though they are not medically qualified and do not see the individual patients themselves. What is the point in medical advances being made when a certain portion of NHS management is set up and funded just to obstruct implementation of these advances? And who decides when the amount of money spent on budgetary control has exceeded the amount they save?— Contributed.

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