So, this is one of those posts I’m hoping family and friends read (as I talked about last week).
The good news
The decision has been made. I saw my neurologist, and I will start Gilenya this month. This is good news, as it is my preferred treatment choice at this point.
Gilenya is a daily tablet – the first oral tablet for the treatment of Relapsing Remitting Multiple Sclerosis (RRMS) on the market.
The aim is to reduce the intensity and frequency of relapses in RRMS. In my limited experience to date, I have relapsed once a year.
The side effects are impressive. They include a slow heart rate (so much so that the first tablet must be monitored in hospital as an outpatient), macular edema, liver issues, and a low lymphocyte count (meaning a suppressed immune system and greater chance of infections).
Still, about 94 per cent of patients continue to take Gilenya after the first year, which is the highest continuance rate of all MS therapies. This doesn’t mean Gilenya patients have no side effects, it simply means that their side effects are better than their MS.
Honestly, I think taking Gilenya is going to be crap. But I can’t wait. The potential side effects are more manageable – and somehow more normal – than what my body does to itself.
The bad news
The bad news is that Tysabri – the most effective drug on the market, is unlikely to be an option for me.
This is because I have a high incidence of the John Cunningham Virus (otherwise known as the JC Virus). About half of you reading this have the JC Virus. It is completely benign, so much so that the medical profession doesn’t know where it comes from or what it does, and therefore they ignore it.
Pretty much the only time it matters is if an individual takes Tsyabri. At that point, Tysabri’s list of side effects includes Progressive Multifocal Leukoencephalopathy (PML). PML is an infection in the brain that leads to severe disability or death. In short, if you have the JC Virus taking Tysabri is not a great idea.
While Tsyabri was not my choice for treatment now, it was the preferred option in case Gilenya doesn’t work in my case, I am among the 6 per cent who have significant side effects, or my MS accelerates and I require more invasive treatment.
A problem for another day.
Here is to hoping that with Gilenya I have no relapse in 2015.