I’m sorry this took so long to write, but you’ll see why at the end of this article.
On May 14th, I attended St Thomas’ Hospital in London for the first of my LIPS Trial infusion (to find out more about this, read my previous blog post). I first met the researcher in the pain clinic where we had first met. After a short wait, I was called through and asked to either take off my trousers, or roll up the legs, whichever was easiest. The researcher – Roy – measured up my leg and made a mark with a permanent marker on both legs. Despite Roy’s best efforts, this was painful, but I soldiered through the pain. He then brought in a plastic box full of warm water and placed it on some scales. I was to put my legs in one at a time and he would be able to weigh them. My right (unaffected) leg was 3.5Kg, whilst my left (effected) leg was 0.19g heavier (3.69Kg). Once I had gently dried off, we made our way to the clinical research ward on the fourth floor of the North wing. Once there, we signed in and I was given a plastic tag with my details to wear round my wrist. We moved into the ward and I selected a bed by the window as it was a nice day.
Once comfortable, The team gathered round and the consultant put in my cannula. Fortunately, the cannula didn’t go in my affected area, so it wasn’t painful.
After everything was checked, the drugs arrived:
I was then hooked up to the machine and the drugs started flowing. One of the researchers – Mariana – stayed in the room with me throughout the trial if anything went wrong. The only side effects that was expected was a metallic taste in my mouth. I felt a little light-headed, but no funny taste in my mouth. Mariana checked my blood pressure and then I was left to my own devices for a while, so I opened my book and started to read.
One hour in, Mariana came to check on me and changed the bottle. The amount of drug used is dependent on weight. My bottles weren’t full to the brim, and lasted about an hour per bottle. In the meantime, I went back to my book.
After lunch, Roy returned and started some of the tests. The first was to measure the temperature of the foot in specific areas. He had a template for the area he would test with six holes in it. This was placed on both my right (control) foot and my left (affected) foot and he used an indelible pen to mark six locations on my feet (I still have the marks on my left leg as I can’t clean them off).
Although this is a touch thermometer, Roy tried very hard to make it as light as possible so as not to cause too much pain. What’s interesting is that the affected leg was 1.3 degrees C colder than my other foot. This is a well-known fact for CRPS sufferers in that although it feels like your affected area is on fire, it’s stone cold to the touch. You therefore need to keep the area covered to keep it warm, but you can’t bear the pain of something touching it; it’s a catch 22.
Roy then moved on to other tests. The first was using a very light filament which has varying degree of thickness. The bigger the thickness, the more effort it takes (and therefore pressure it exerts) to bend it. Starting with the thinnest (which looked like a fibre optic filament) he started on my good foot in the same positions he measured the temperature, then moved on to my bad foot. There were four tests with these filaments which I could stop at any time if the pain got too much. The last test was using a paint brush in a sweeping motion on the top of my foot. That was the most painful and peaked my pain score at 10.
When the last bottle had drained through my cannula, they re-checked my blood pressure and removed the cannula. I was given my next pain diary and allowed to go home. Roy booked me a Taxi which took us back to the station.
The important question:
So, have I noticed any benefit from the infusion yet? I have certainly noticed that my recovery period has reduced. Usually, it would take me 3-4 days to recover from a trip up to London. In this case, I had one day recovery on the Thursday and by the Friday, I was cleaning up under the bed. Does this mean I had the Immunoglobulin? I can’t tell. The placebo drug curiously also has some pain relieving side effects, so I won’t know till I have had all four infusions sometime mid-summer. Am I encouraged? You bet! I have been able to do more things than usual. I can’t climb stairs or walk long distances yet, but a reduction in the recovery period is certainly encouraging, even if that’s the only benefit I get. Had I had this treatment in the first few months of my CRPS, it could well have solved the problem, but we won’t know. All I can say is that if you have CRPS/RSD and can help take part, do. Even if it doesn’t work for you, it could help prove the point to the National Institute for Clinical Excellence (NICE) to allow this treatment on the NHS, which could potentially save someone else from this rotten illness.
I next return to have my last trial infusion in early June, after which I move on to the voluntary ‘open label’ infusions. I will keep you posted about any developments.