When I found out that I needed a stem cell transplant, at the age of 21 back in 2017, I felt quite apprehensive about it, but ultimately felt that it was the best course of action for me.

I’m fortunate that my transplant has been successful, and seven years on, I’m doing well and living life to the full. However, from around eighteen months post-transplant, I’ve been living with chronic skin GvHD, for which I’m still receiving treatment. It’s been very challenging, uncomfortable and painful at times, but I’m pleased to say that I now feel that I’m ‘living with’ chronic GvHD, rather than ‘suffering from’ it, and I’m able to manage my life well around it.

Being diagnosed with chronic skin GvHD

At around eighteen months after my transplant, I started to feel like things were turning a corner in a positive way, with my blood counts improving nicely and energy levels starting to recover. However, at the same time, I noticed that my skin was becoming quite inflamed, dry and flaky, and could be quite sore and itchy at times. Initially not thinking much of it, the condition of my skin continued to worsen over the coming weeks, and I experienced pain which I can only liken to feeling like I had been badly sunburnt. The skin over my joints had started to become tight and ‘leathery’, making it difficult for me to move properly. As someone who has played the piano since the age of six, I found it very upsetting that I was now finding it difficult, and painful to do something that I loved.

After telling my consultant about the severe pain that I was in, I was quickly diagnosed with severe chronic skin GvHD – so severe in fact that they felt that the usual first-line treatments, using ciclosporin and steroids with moisturising creams would likely be ineffective. It was at this time that I was told that a treatment called ECP (Extracorporeal Photopheresis) could work for me – but that it wasn’t a quick fix, potentially taking two to three years to see a response, and accompanied with side effects, such as severe fatigue after receiving treatment.

At the time, ECP wasn’t routinely funded for chronic GvHD, and my consultant had to put in a request for funding, similar to how Eltrombopag requires funding, and demonstrate that we had tried all of the other treatment options available. Unfortunately for me, this meant that I had to wait for around six weeks before starting ECP, taking medications that we knew were ineffective, while being in incredible pain, and suffering a lot.

Starting ECP – What is it, and what it it like?

ECP, also known as Extracorporeal Photopheresis is a treatment for GvHD which aims to destroy a specific type of white blood cells in the blood that cause GvHD. Essentially, the treatment involves being connected to a machine that takes blood from a vein in your arm, which then separates out the cells that cause GvHD. These cells are then treated with a drug which makes them sensitive to UV light, and the machine then exposes the cells to UV light. While this might seem quite strange and sci-fi-esque, it’s thought that exposing the cells to UV light kills the cells, which after returning them into your bloodstream, triggers a chain reaction to kill off further cells and reduce the severity of the GvHD.

Each ECP treatment takes around two to three hours, with sessions taking place on two consecutive days. In the early days of treatment, this takes place ever two weeks – which can seme like quite a burden to arrange around other commitments. However, as time goes on, and if the GvHD seems to be improving, the frequency of treatment can be reduced, initially to every four weeks, but later to potentially every six weeks, or even eight weeks – which makes it much easier to factor in treatment around our daily lives. ECP isn’t a quick fix for chronic GvHD unfortunately, and it can take two to three years to see a decent response to the treatment.

Photo of an ECP machine, prior to starting treatment

While on ECP, it is also very common to take ciclosporin and steroids at the same time, but over time, as the GvHD improves, it is possible to reduce the doses of these medications.

When I started ECP, I felt very apprehensive about it, as I’d heard bad things about the potential side effects, such as severe fatigue. While I did often feel very fatigued in the early stages of my treatment, this did become easier to manage as time went on. I actually find the treatment quite relaxing – it’s simply a case of being connected to the machine, either through a cannula in your arm, or, if your veins are useless like mine, through a dialysis line (similar to a Hickman line, which you might be familiar with from during your transplant), and lying back and relaxing for a couple of hours. The treatment isn’t painful at all, and if you’re lucky, you might even have tea and biscuits brought to you by the lovely nurses who take care of your treatment!

Five years on since the starting ECP, how are things now?

Five years on since I started ECP, and seven years since my transplant, I’m pleased to say that things are going really well, and I’m living life to the full.

You may have noticed earlier in my blog that I mentioned that most people with chronic GvHD are treated with ECP for two to three years – and that is often the case. However, my situation has been a little more complicated. My GvHD is now very manageable, and doesn’t really cause me any issues day to day, other than perhaps a little dry or itchy skin. After receiving support from a physiotherapist, I’m also able to play the piano again, which is amazing.

However, although I’ve been able to stop taking steroids and ciclosporin completely, I’ve found that when I try to wean off ECP, or stop it completely, my GvHD flares up quite badly. Because of this, five years on, I’m continuing to receive ECP every eight weeks, and will likely continue doing this for the foreseeable future. While at times I do feel a little disappointed that I’m still needing treatment for GvHD after all these years, ultimately, it is the treatment that is allowing me to live life to the full. I’m very fortunate to have a incredibly supportive family and employer, so being able to schedule my eight-weekly treatment around work and other commitments is never an issue.

For anyone who is experiencing chronic GvHD and facing the prospect of being treated with ECP, my advice would be to try and pursue with it, as challenging as that may feel at times. Over time, the results of the treatment can be incredible.

Speaking to other people who have had a stem cell transplant, or are experiencing GvHD can be really helpful. I run a monthly chat/support group each month for people who are pre or post-transplant. You are very welcome to come along, and you can find out more about the upcoming sessions here.