In the context of everything else going on at the moment, yesterday was relatively unremarkable. But for me, it marked the first change in treatment for my haemophilia in 30 years.
For the first time yesterday, I treated myself with a new, extended half life (EHL) product. For 30 years I have been treating myself with recombinant (man-made) Factor VIII. I inject this 3 times a week and over the last 10 years or so, since I’ve been running and training, I have almost always treated myself on the days I run.
Now that I am on EHL, I will only have to treat myself twice a week. Not a huge change, as it means only one less injection a week. But that’s four a month and 48+ a year. I’m sure my veins will be grateful.
The biggest change I anticipate, will be the mental adjustment. Many people with haemophilia and parents talk about “safe-days” in other words, the day they treat on: that’s when they feel at ease to be the most active, play football, run etc. On the other days, people moderate their behaviour because they don’t feel as well insured from potential bleeds.
My biggest challenge will be to decide which day of the week I want to take my second dose. On Sundays I tend to go for a long run, so I will ensure I always treat on that day. I will then need to treat again midweek – Wednesday or Thursday. Often my work schedule dictates which day I run. If I am away from home for example, running is easy as I can pop out the door from wherever I am and get some miles in. So I may end up adjusting when I treat, with when I run.
However, at least once a week, I will want to run and not have injected that day. That is the unknown for me. How will I feel afterwards? Most importantly, how will my ankles respond…
I treated and ran yesterday for the first time with EHL. Today, my ankles feel good. Better than usual maybe. But I didn’t’t run as long as I usually would because I’d been able to do two longer runs in the week, due to the current situation. I did do some harder efforts though, so it’s encouraging they are feeling okay.
Those of you in the haemophilia community may be surprised that I am only now moving over to an EHL. They have been around for some years. And of course we are now in the era of gene therapy. So why now? Why not sooner?
There are many drivers of change for people with haemophilia. For me, the most important one is, what is right for the individual. As Chair of the Haemophilia Society, I have the advantage of attending many conferences and having a good knowledge of what products are available and thus what options are open to me. I feel I’ve been able to make an informed decision in conjunction with my haemophilia centre.
The reason I decided to change, was timing. I had previously been offered the opportunity of going onto a trial for this product, but declined. Over the years I have been on several trials, but this time, I just didn’t feel able to. Partly because I live in Yorkshire and my centre is in London. Trials are rightly demanding. They require a lot of time attending the centre, or being available for blood tests, so the best possible results are available to evaluate efficacy and safety. I didn’t feel able to dedicate the required time to doing it over the last few years. I know others have and to them, the community are hugely grateful.
Having treated myself for a few weeks on the new product, the next logical step would be to have a pharmacokinetic (PK) study done. This is in essence a series of blood tests, to see how long the product remans in my body. Everyone is different and so this would give a picture of the half-life of the product and how long it takes generally for my body to metabolise the treatment. With EHL products, the main change has been to add a particle which prevents the body breaking it down and therefore remains in the body for longer.
With the current restrictions on movement, who knows when I will be able to do this. It clearly isn’t urgent. Being at home gives me some routine and therefore a good environment to “test” how my body responds to it. I’m able to train more at the moment, due to not being away from home.
As many of you know, my goal for the year is/was Ironman Wales in September. Many Ironman races are being cancelled at the moment, so I have no real sense of whether this race will take place. One focus I’ve always had is simply the training. I’ve always ensured I enjoyed that. I do this for fun. (I know, I know – 140.6 miles of torture is not generally considered “fun”) A few years ago I was being coached and I didn’t enjoy it. It meant I couldn’t train as much with my friends. So I cut that out. They say it’s sometimes better to travel than to arrive. I’m enjoying the travelling at the moment. Even if I don’t know the final destination.
Last week enabled me to do quite a lot of training. I got in a total of 11 hours, made up of 4hrs running, 2 hours in the gym and 5 hours of cycling.
This week will be my first week of training on EHL.
The hope is, of course, that it will give me better coverage generally and more flexibility to live and train without treating every other day or so.
Time will tell.
I’ll keep you all updated.