In 2003 I had a massive flare which resulted in a three and a half month stay in hospital. I was quite poorly and watched helplessly while my condition deteriorated, on some days it literally felt like I was in some disaster movie. Surely this couldn’t be happening to me?
Only after receiving a few treatments of Plasma exchange did my condition improve and even though a few treatments didn’t work, I was blissfully unaware of all the innovation that went into creating the medications that did work for me and life went on as normal pretty much as soon I recovered.
A year later I graduated from university and began a career in research soon after. But it wasn’t until 2011, when my Lupus became active again, that I realised I had definitely taken my health for granted and rested too comfortably in the perceived security that there would always be treatment options available for me when I needed them. Unlike in 2003 every treatment that was administered seemed to fail. But despite this I was still considered “too well” to go down the Plasma exchange route this time.
I had received cyclophosphamide 3 times in the past (2000, 2003 & 2011), so that wasn’t an option, 2 unsuccessful courses of rituximab and numerous steroid injections which provided short relief but was not treating my flare. I felt like I couldn’t keep going on like this, the pain and fatigue was becoming unbearable and it was during this time when my lupus nurse came to talk to me about potentially taking part in a drug trial. I have to be honest (even though I had worked in research for a solid 6 years at this point and my lupus was at its worse), I was still hesitant about personally taking part in a clinical trial.
My job had shown me first hand how research can improve outcomes and patient quality of life, but the thought of taking part in a trial made me feel like a ‘lab rat’ in an experiment, the idea of being part of a clinical trial took me way out of my comfort zone. I remember wanting to help and I understood the importance of the research (maybe a little more than most), but I was still scared and just wanted to get better as quickly as possible. The trial was explained to me in detail and I fully understood what was involved, but still I felt like I didn’t know what to expect. The best way to explain it is that I felt as though I was adding to my problems not solving them!
In the end I thought back to 2003 and how poorly I was and the trials that would have taken place for me to not only still be here today, but remain flare free for so long. I used this to I overcame my doubts, fears and insecurities and made a decision to take part.
Taking part really wasn’t as scary as I initially thought as the care that I would usually receive would not be affected. Infact I was actually going to be given some additional treatment. In the end it turned out that I wasn’t eligible to take part in the trial as by this time my kidneys had been affected by my lupus, but I was still proud of myself for taking a leap of faith.
As fate would have it a few years later I ended up working in Lupus research as a trial coordinator. Since working here I discovered Benlysta (belimumab), which was the drug being investigated in the trial, was the first drug to be approved to treat Lupus in more than 50 years.
Lupus patients are living longer and have a better quality of life then they did in the past. Whilst I think we have come a long way, there still needs to be more treatments options available for when we need them. These new treatments can only become available through research and clinical trials, so although I initially felt that taking part in a clinical trial felt like an invasion on my life, I am all for innovation and am proud to fly the research flag. So next time someone talks to you about taking part in a trial it might be worth thinking about what your life would be like without research.
You can follow my journey on instagram: luppie_lu