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Rebecca Barnard

2016-09-29 11:22

Paul's Story

I was diagnosed in my late 30s with seronegative rheumatoid arthritis and psoriatic arthritis. I previously worked in transport and distribution and in the taxi industry and retired in 2014 to help my wife get over a stroke (she is now doing well). I also help to manage a Scout camp.

The first symptom of my arthritis was numbness in my wrists which progressed over time across both hands. In the early days, the only way to describe the pain was as if every nerve ending in my body was on fire; this would be followed by painful inflammatory flare-ups. To give you an idea, my normal erythrocyte sedimentation rate reading (an ESR blood test monitors the activity of underlying conditions causing inflammation) were mostly in the high 80/90s. I am fortunate in that my doctors have told me I have a very high pain threshold, so I try to not let the pain take my over my life and I just get on with it.

I have had two operations to remove the distal ends of the ulna from both wrists, before this operation you could feel and hear the bones grinding (exciting!). My fingers would also stick in position and I would have to physically manipulate them back into place, unfortunately, this still happens.

I have been prescribed prednisolone, sulfasalazine, methotrexate, and gold injections with varied results. I tried methotrexate for nine months but it seemed to aggravate my condition and to concentrate in my wrists making them worse, and so I requested that my consultants find an alternative.

I was prescribed Enbrel (etanercept) in 2010 and I cannot begin to explain the joy of waking up the day after the first injection to no pain and a functioning body. I was suddenly able to do anything without pain; I decided to stop smoking shortly after starting the drug, signed up to a gym, bought a bike and re-discovered swimming. Enbrel has allowed me to do much more and to date has been keeping me mobile and mostly pain-free.

I know that all drugs will overtime lose their efficacy, and I now have to take good old methotrexate again to help keep my arthritis in check. I also have to take painkillers because of a failing knee, which I will eventually need replaced.

Alongside enbrel and methotrexate exercise is my way of managing my pain: I cycle, go to the gym and swim regularly, followed by a cup of tea and a nap.

I do believe that there is a connection between the weather and my pain. As a child I had rheumatism and I always knew it was going to rain because my knees would creak! I feel fine most of the time, but it's when the wet grey days arrive that I am reminded of how quickly my condition can worsen. I can happily lie down on a sun lounger all day and not get bored - I must have been an Inca in a previous life! The warm weather over the summer had me feeling like superman, it was like getting a new body!