From around 2010 to 2013 I was on a drug called Rituximab to control my autoimmune conditions (rheumatoid arthritis and vasculitis). This highly effective medication targets b-cells and destroys autoimmune responses by disabling parts of the immune system. After a few years of treatment, though, my immunoglobulin levels were extremely low and it was decided that Rituximab was no longer safe for me. I was moved to tocilizumab. Immunoglobulins are the antibodies that bind to foreign targets within the immune system.
Since that time I have had some serious complications from secondary immune deficiency. The chest infection I had in 2016 led to a stroke as the coughing dissected my carotid arteries. The pneumonia and sepsis I had in 2017 led to acute hearing loss via oto-toxic antibiotics that saved my life at the expense of my hearing. My autoimmune conditions have also spread. I now have IBD (specifically Crohn’s disease) and we are using the chemotherapy agent cyclophosphamide to control these intersecting conditions. This is an unpleasant drug, to say the least, but there is some correlative evidence that tocilizumab isn’t safe in patients with bowel problems and can lead to perforation. It also wasn’t doing enough to control the Crohn’s.
In the meantime, my immunoglobulin levels remained alarmingly low and I was referred to immunology. I had that appointment today.
Immunology are of the opinion that my immunoglobulin levels are dangerously low and unlikely to replete. To remedy this situation, in which I am at grave risk of infection, I need to be given a manufactured blood product – immunoglobulin – regularly and most likely for the rest of my life.
How regularly? To begin with, every two weeks. It takes a full day in hospital and this is deeply inconvenient. After the first six months or so I may be able to do the drip at home, or move to a daily self-administered injection. The latter would be fine. Unfortunately, each dose only lasts a relatively short time.
What is it? It’s a blood product distilled from, apparently, over 1,000 blood donations for every single dose that basically contains a set of current antibodies. It should give me better protection from infection. However, it is basically a type of blood transfusion that I will require forever, and this comes with risks, regardless of how good the filtering processes are.
How serious? Immunology seemed very concerned and they are starting me on the treatment urgently on Tuesday. The treatment is incredibly expensive – although due to the brilliance of the NHS, I will not pay except through general taxation – and they told me they do not use or suggest it except in cases where it is absolutely necessary.
All of these conditions are linked to autoimmunity, the challenges in treating them, and the dangers of immunosuppression. I put on a brave face, but it’s also very psychologically difficult to be told, time and time again, that you will need to spend yet more of your limited time on a hospital ward, wired up to a drip, for the rest of your life. That your wife will have to receive training in administering an IV drip if you want to do this at home. Each one is a memento mori and a kick in the gut, to be honest. There are worse things – this one will make me far less ill than the cyclophosphamide – and braver people than I will go through these without making a song and dance of it, but this treatment is far more intrusive in its timings and administration. And it won’t stop until I die. The system at my hospital was actually pretty good; they even have a counsellor on the ward with whom I can speak if I wish – which was more than rheumatology have ever been able to offer. But really, can’t I just get a break, please, and not have any more serious lifelong degenerative invasive medical problems?