It has been almost 28 years now since I first became unwell with what was eventually diagnosed as being a rare form of systemic T-cell lymphocytic polyarthritis, systemic vasculitis, and Raynauld’s Disease.
Having been transferred from three different hospitals in an effort to diagnose and treat this devastating disease, it wasn’t until I met Dr Martin Lockwood at Addenbrooke’s Hospital in Cambridge at a very poorly stage in my life, that I was eventually given [Campath-1G]. The drug not only saved my life, but changed my life completely. Since then I have received the humanised version [of the drug] Campath 1H, and subsequently trialled various other monoclonal antibodies, which have been my saviour.
However, I went on to develop antibodies against Campath-1H, and now cannot have it any more, which was a huge blow to us all. We tried using plasmapheresis to combat the huge immune response that was causing so many problems, but alas, to no great benefit. That said, I can still say that my disease has completely altered ever since the use of monoclonals, and I am pleased to say that my disease is much less angry and aggressive than it once was.
I have since been able to have my hips and knees replaced, approximately 10 years ago. It made a remarkable difference to my life, as I had become chair and bed bound up until then. I have also had hand and wrist operations, and all in all, I am much improved both physically, mentally, and pain wise, thanks to monoclonal antibodies and surgery.
Devastatingly, Dr Martin Lockwood lost his life a few years ago, and for a few years thereafter, no treatments lived up to expectations given by Campath. However, fortunately for me, Dr David Jayne has fought hard to get me included in drug trials, and once again I have been lucky enough to respond miraculously to yet another treatment, called tocilizumab. Thanks to the head start given by the initial monoclonals, tocilizumab has proved a major breakthrough, and once again I have been given the chance of a much improved lifestyle. In fact, it is so improved that I have been able to move out from living with my parents, who nursed, supported, and cared for me for 40 years, and I now live in an adapted bungalow with my new husband of just 1 year 7 months.
I still need the use of a wheelchair much of the time due to the damage done to my ankle joints and feet, and require continual nursing care throughout the day time, as the polyarthritis has damaged all of my joints so that I cannot manage to live independently. I also suffer a lot of pain, and require pain killing injections most of the time.
However, my nurses are fantastic, as are my family and husband, and their care, love and support help me to get through and enjoy what is now the most independent part of my life, where I am no longer restricted to bed most of the time, or indeed hospitalised to the extent that I once was. For this I am truly grateful to both my doctors, current and of old, and to all of the scientists behind the scenes who have worked towards developing such amazing therapies which I hope will benefit others as much as they benefit me.
I have since developed type AA Amyloidosis due to years of high inflammatory markers present in my blood, and am now in chronic renal failure, having haemo dialysis three times a week, which will continue for as long as it is necessary. I received a live kidney donation from my Father in January of this year, but alas my immune system wouldn’t accept the graft, and I lost the kidney. However, I am now being considered for home dialysis, which will prove beneficial to both my health, and my lifestyle, and I also live in the continued hope that I may be considered for transplant once more in the future, when my husband will be a considered as a potential donor, as he has proved an excellent match in the past. Fingers crossed this will have a better chance of success, and I will go on to share my story for a lot of years to come.
Written in Memory of Dr Martin Lockwood
With specific thanks to:
- Professor Herman Waldmann
- Professor Geoff Hale
- Dr David Jayne
- Professor John Isaacs
- Dr Adrian Crisp
- The late Dr Martin Lockwood
- The late Dr Barbara Ansell
- My parents
- My sister and brother-in-law
- My husband Matthew
- My nurses