LIPS Trial – First Infusion:

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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.

LIPS Trial Infusion 1 - view out of window

My view from my bed

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.

LIPS Trial infusion 1 - canula and forms

My cannula and some questions I had to fill in.

After everything was checked, the drugs arrived:

LIPS Trial infusion 1 - four boxes worth of drugs

Four boxes of the drug- could either be the Immunoglobulin or the placebo.

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).

LIPS Trial infusion 1 - testing the temperature of the foot

Roy, measuring the temperature of my foot with a thermometer. In the background, the London Consultant.

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.

LIPS Trial infusion 1 - IV Pole

The IV pole with one bottle draining and one ready.

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.

LIPS Trials, 100 days and Work:

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As usual, I have to start my blog post with an apology for not having written more. It’s something I keep neglecting and something I strive to improve. If it’s any comfort, I keep forgetting to write my diary too, so when I finally get round to doing it, it takes me ages to do so. As a result, I have three main things I want to write about in this post: LIPS Trials, 100 days and Work.

Work:

Starting off with the least pleasant, but something that needs to be said none the less. As of 28th April 2014, I no longer work for the Police. After months of effort and constant communications between myself, my line manager, my Inspector and HR, the inevitable happened and I was retired on grounds of Ill health. It’s something I’ve expected for years now, but this still doesn’t make it any easier to accept.

It was decided towards the end of last year, that my time in the Control Room, where I had worked (health permitting) for the last 3 years, would be at an end. The reason for this was that my constant use of pain medication – needed to keep me out of bed – was clouding my memory and sometimes my judgement, potentially putting officers or members of the public at risk. I never saw (or heard) any of these deficiencies in myself, but I’m glad they were mentioned before anyone was harmed because of me.

The plan was to move me to somewhere closer to home (my daily commute was anywhere between 40 minutes to 90 minutes each way depending on time of day and traffic), and with less stress (which made the pain in my leg worse). Sadly, there is now very little for a civilian to do at my local police station. The closest station where something would have been available was about 30 minutes away (not for from the control room really). We asked the Force Medical Officer if this distance would be ok, but he refused (and as it turned out, longer term, the department I would have joined never moved to that station anyway).

So there you have it. Of course this upsets me, but I understand why it happened. So what is the next step? As you know, I’m learning to become a web developer and coder from home, so I hope to move into that field as and when I can, either freelance, or in a local company.

100 Days:

Whilst on the subject of coding, I have started a new series on Give it 100. If you’re not familiar with the website, it’s a social learning website where you commit to make a 10 second video everyday to show what you are doing/learning. There are many videos of people learning to do everything from learning to play the drums, to becoming a mum. I thought it would be a good motivation exercise to encourage me to continue to code every day. So far, as you can see, I have made several videos and received lots of good supporting comments.

LIPS Trial:

Finally, on to the most important aspect of this post.

If you are a regular follower or friend, you will know I suffer from a disease called Complex Regional Pain Syndrome or CRPS (AKA. Reflex Sympathetic Dystrophy or RSD). With the prospect of losing my job because of the illness, my wife thought it would be worth looking if there was any help available to sufferers. Fortunately, she stumbled across a part of the NHS website which had Clinical Trials running. One of them was for CRPS.

LIPS Trial, or  Low-dose Intravenous Immunoglobulin Treatment for Complex Regional Pain Syndrome, is run by the University of Liverpool, and the study is investigating whether Immunoglobulin (Ig) is an effective treatment for CRPS. There have been some promising first steps, and now this is a wider study to see if the drug is a worthy treatment of this retched disease.

After a bit of persuading, I applied to be on the trial. I was quickly contacted and motions were put in place to have me referred to the study. This week, I made my way to St Thomas’ Hospital in London for my first appointment.

There was much paperwork filing and an assessment by the consultant in charge of the London running of the study. The Consultant was very kind and helpful, explaining that CRPS is an immune disease and that Immunoglobulin is a regular treatment for immune diseases. They were very happy to have me onboard and went ahead taking blood samples to make sure that I was completely suitable and to get a baseline of my Ig levels.

The study has two infusions, which will be double-blind, meaning no one (not even the examiners) will know if I have the Ig or a placebo. After two infusions several weeks apart, the study is over. From the time I’m admitted on the course, I have to keep a pain diary. These will help the researchers define if my pain levels are better or not and if it was because of the Ig or not. After the two double-blind infusions, I’m allowed to ask for the Ig infusion up to twice. These second two infusions are completely my choice, and could help me decide if I was on the placebo, or the real thing. Once the infusions are finished, I continue to complete my diary for a while till the end of the study.

I’m greatly looking forward on taking part in this study, as I would love to see a treatment (or dare I say, cure?) for CRPS be available. Even if it doesn’t do anything for me (I’m at the limit of their diagnoses range, 5 years), I hope that it helps them find something out and help others. However, at the moment, there are only 11 people on the study (although that was unclear if they meant 11 in London, or in total). If you read this, and know someone who has CRPS diagnosed within the last 5 years, I urge them to take part to increase the sample size. Please, share this post and pass it on to anyone you know would be interested. Check out the trial website, which gives you more information and what the criteria is.

Thank you, and stay tuned, as my first infusion is set for 14th May, so I will keep you posted.