I have been a bit under the weather of late. To be specific, I’ve been ill since Christmas. I won’t go into details but I have a disease called Ulcerative Colitis. If you are interested you can look it up on Google. Anyway, a Japanese company called Asahi Medical, have developed a new treatment for UC using something called the “Cellsorbaâ„¢ Leukocytapheresis column”. Several thousand Japanese patients have had this treatment and you can now get it as a matter of course if you are Japanese and live in Japan on the Japanese Health Service. No so almost everywhere else on the planet. As a result, Asahi Medical are offering trials to various hospitals throughout Europe to try and get it accepted more widely as a treatment for UC.
Living in Oxford, I’m treated in the UC Clinic in the John Radcliffe Hospital. They have been offered a trial and I became the first person in the UK to try this new treatment. Due to Doctor – patient confidentiality, they can’t tell you who I am, but of course blogs are causing all sorts of confidentiality problems. Look what Apple does. One of the things that the Internet has done is to make medical experts of all of us. You can hear about a disease, look it up on the net, and become an expert in just a few minutes. So obviously I wanted to look up exactly what Leukocytapheresis was and what happened when you had it done.
Guess what, the Internet failed me. It’s full of reports on case studies about various trials, not a single one really explains what happens to the patient. Now I know you are not really interested in this, but after all that preamble, this blog is going to tell you exactlywhat happens. Incidentally, If I’d only gone to Asahi Medical’s website I could have found out quite a bit – see here.
Basically, the doctors think that UC is caused by the white blood cells (Leukocytes) attacking the colon. So the idea behind this new treatment is to take your blood out of one arm, put it through a filter which filters out these cells, and then put it back in via the other arm. The machine they use for this is similar to the machine they use for dialysis for kidney patients except you don’t have to have the treatment for so long.
Now the thought does cross your mind, why have you got all these white blood cells in the first place if they cause so much trouble. Well of course, you don’t mention this to the doctor because clearly there is a reason and you don’t want to look a total idiot asking such a stupid question. So after asking the question, I discovered that apparently, these are the cells that ‘protect‘ you from other illnesses, viruses, etc. They (the Leukocytes) just think that the colon is an infection and should be got rid of. Same sort of problem as when you have a organ transplant. So by filtering them out, they can’t attack the colon so it gets better but you are now left open to all sorts of other diseases that happen to be floating around. Brilliant.
Anyway, the ‘treatment’ consists of 5 weekly sessions where you have about an hour or so of this blood sucking process. Look at the diagram on the Ashi Medical page and you will see the general layout.
Here’s an image of me going through it. You can see the cellsorba column near the centre of the picture full of my .. er .. well blood actually!
So, what’s it actually like. Well the worst bit is the putting in of the needles, you obviously have one in each arm and the are about 1mm in diameter, so not the sort used for a quick blood test. They are incredibly sharp so if the doctor puts it in quickly, then there’s the tiniest of pricking, however if he dithers about its more uncomfortable (ok, it really HURTS!).
After that, you just have to lie there for an hour or so while your blood is pumped out of one arm, through the machine and into the other arm. As the blood is returned (minus your white blood cells) it’s quite cold so they cover you up to warm you up a bit. Hence you can’t see the tubes coming out of one arm and into the other in the photo.
One thing that astonished me was the design of the machine. It’s a general purpose machine so that it can do all sorts of ‘blood pumping’ operations including dialysis and leucocytapheresis. The display shows the various pressures and can log them, but the doctors tend to write them down on a notepad every few minutes. They can if they wish get the machine to display the log of all the pressures and how they have varied through the proceedure. I would have expected a usb or serial or RJ45 ethernet connection so that this can be downloaded. However there’s no such facility! You have to copy the readings off the screen!
Lets ignore the machine design deficiencies; how effective is the treatment. Well, it didn’t have a huge impact to begin with for me. Frankly, I started referring to the ‘placebo’. Usually with clinical trials, some of the patients have a ‘pretend’ treatment which has no effect so that the results with the real treatment should show a definite improvement. However, after the 5 treatments, I’m definitely better than I was at the beginning but unfortunately not completely better. The down side is where do we go from here?