Bill’s leg bowed 

Bill, a member of the Paget’s Association, from the north-east of England, explains that his leg has become bowed due to Paget’s disease 

What started this disease? I have Paget’s in my lower left leg and I sometimes speculate where and how it might have begun. Many years ago, I broke my left ankle in a pit accident having caught my leg under a sleeper. I had a further bad accident when my left leg was one of the many places badly scalded by very hot steam in the Coke Works. Both occurred in 1960 when I was 25 years old. The doctors put me back together and built me up, however, it was 13 months before I worked a normal working week again. From about that time my leg did, at times, give me problems with pain and warmth. By late December 1967 there was also evidence of a slow bend in the bone and the distance between my knees was two fingers wide. 

In February 1968 I was running up the stairs at work when I slipped and broke both my tibia and fibula (lower leg bones). Five days after the event it was noticed that the leg had not been properly aligned. This was corrected by cutting the plaster and then, without sedation, correcting the alignment (it hurt!). It was settled back into its plaster cast and figure 1 shows an x-ray 3 months after the event. At no time was Paget’s mentioned. 

By 1974 problems with the leg had worsened, and my GP sent me to hospital for an x-ray. This was when Paget’s was diagnosed. The advice was to wear elastic stockings but this changed in 1978 when I was advised to wear normal socks. 

Five years later I was hit by a discus on the leg which caused a stress fracture and doctors at the hospital I attended applied an elastic stocking. A few months later I suffered a further stress fracture when I slipped on a steep grassy bank. Attending a different hospital, I was given a knee length plaster cast until the bone healed. 

For the next nine years the leg slowly deteriorated. In October 1988 the pain really kicked off. At that time I was a Principle Training Officer for South Tyneside Local Authority and whilst I was driving to work, I suddenly experienced severe pain. I discovered that this was from stress fractures which caused me both pain and warmth around the leg. My consultant, who had put me on Etidronate disodium tablets, noted that the x-ray from 1968 (figure 1) had shown signs of Paget’s.  

Unfortunately, in August 1995 my consultant died and my GP and I decided to continue as best we could. By October 1997 however, the problems had gone beyond our area of expertise and I was referred to the Freeman Hospital in Newcastle-upon-Tyne. Following scans and tests and with an Alkaline Phosphatase (ALP) reading of 511, I was, put on Skeled tablets for six months, after which time my ALP reading had dropped to 85. By June 2000 it was up to 135 and a further course of Skeled brought it down further to 61. 

Four years later in 2004, my ALP had crept up to 162. Pain and heat had been intermittent and co-codamol really helped with the pain. In summer 2004, I was given Actonel (Risedronate) for 2 months. Things quickly improved and I rarely experienced pain and heat. To help with my walking, I had been using two crutches since 1988. A year after taking the course of Actonel I was down to one crutch. These days I can’t walk far without my stick and occasionally need two. Since 1988 I have had a blue disabled badge but this was taken away from me recently when the rules changed. I suspect this was due to lack of knowledge regarding Paget’s on the part of those making this decision, because when I appealed and supplied some of the Paget Association’s information my badge was reinstated very quickly! 

I have regular check-ups and it is now over ten years since I have needed any medication. The space however, between my knees is now two hands plus two fingers wide. The photo shows my present leg shape. Walking may be slow but I get to most places I wish to go. Due however, to the bend in my leg, I’m having, on occasions, where hills are present, to use two crutches. The main problem is standing still, when my leg gets restless and aches. Sitting and lying in bed causes no problems. I have lived with this for many years and have maintained a good work and social life.  

In August 2015, I needed more treatment. After taking a course of Risedronate Sodium tablets, my ALP reading had dropped to 65, from 155, by Jan 2016. The previous course I had was Dec 2004 and so it lasted up to August 2015. Hopefully, it will be 2026 by the time I need another - at the age of 92! 

X-ray taken in 1968

X-ray taken in 1988