The White Elephant in the Room…I remember hearing this expression as a child and not understanding what adults meant by it, not getting the sarcastic notion implied. Today, when I hear it, it makes me laugh. I love elephants – not the white ones that everyone wants to ignore, the gray ones…for their genuine nature, the way they truly pull together as a team, and a family, the way the bond for life and mate for life. They love each other regardless of how the other elephants look or if they are injured or hurt. There are some humans that could learn a lot from how the elephant families stick together. That’s a different topic for a different post, though.
Today’s post is about the white elephant that perks eyebrows, that makes even the most reclusive person in the infusion center look up from their magazine, book or Ipad when they here the three letters. It’s as if we have our own dirty little secret brewing in the lab…and we don’t want anyone to talk about it. I think it’s all because there hasn’t been enough talk about it.
So, what is the white elephant? PML. Well, actually there are two elephants. It’s almost as if they jockey for the space in front of us, taunting us for 1st place, seeing who can hold fears hand best. PML and JVC. Fear not….with knowledge of these two three letter acronyms – you can feel a little more empowered and turn these white elephants into smaller creatures, like, oh – maybe kitty cats…that just need a little bit of monitoring and attention every now and then. That attention we need to not take lightly – and that’s why we are all enrolled in the TOUCH program, and why we have wonderful caring nurses and doctors and pharmacists who are all enrolled in the TOUCH program.
OK – so what is PML. In a language that we can all understand puhleeeze! PML is short for progressive multifocal leukoencephalopathy, which is a rare brain infection that usually causes death or severe disability. Tysabri increases the risk of gettting this infection – usually if you have a weakened immune system.
The Tysabri Website says:
Your chance of getting PML may be higher if you are also being treated with other medicines that can weaken your immune system, including other treatments for Multiple Sclerosis (MS) and Crohn’s disease (CD). You should not take certain medicines that weaken the immune system at the same time you are taking TYSABRI. Even if you use TYSABRI alone to treat your MS or CD, you can still get PML.
- Your chance of getting PML increases if you have been exposed to John Cunningham Virus (JCV). JCV is a common virus that is harmless in most people but can cause PML in people who have weakened immune systems, such as people taking Tysabri. Most people who are exposed to JCV do not know it or have any symptoms. This exposure usually happens in childhood.
- If you have been exposed to JCV, your chance of getting PML increases even more if:
- you have received TYSABRI for a long time, especially longer than 2 years
- you have received certain medicines that can weaken your immune system before you start receiving TYSABRI
Your doctor may do a blood test to check if you have been exposed to JCV before you start receiving TYSABRI or during your treatment. There may be other risk factors for getting PML during Tysabri treatment that we do not know about yet.
On another Blog, I found this information: (by Julie Stachowiak, PhD )
The US Food and Drug Administration just approved a labeling change to Tysabri (natalizumab), which states that people who test positive for JC virus antibodies are at higher risk of progressive multifocal leukoencephalopathy (PML) if they take Tysabri.
I should start by mentioning that the scientific community has been studying the predictive ability of JC antibodies to indicate that people with a positive test are at an increased risk for PML, however, the test only recently became commercially available. There is now a new lab test from Quest Diagnostics, called STRATIFY JCV
What does this mean and why is it relevant? Well, this means that doctors and people with MS can now make more informed decisions about Tysabri than before.
JC virus is the infectious agent that causes PML, a potentially fatal brain disease. However, many people in the world have been infected with the JC virus. The virus does not appear to cause any disease in people unless conditions are “just right.” In a small percentage of people who take Tysabri (and a few other medications), conditions will be just right for the JC virus to proliferate and cause PML, as certain immune cells that usually keep this virus in check can become depleted.
S0….what is the JCV Virus…the OTHER White Elehant in the room? it’s the John Cunningham Virus. A Virus that the majority of us pick up as children.
What does all this mean?
It’s still quite scary and it’s all still quite confusing. Really.
But to be honest. It means making a list of checks and balances. Going back to the basics. Pro’s and Con’s. What is important to you. For me…that means Prayer. Praying to God. Talking to my husband…and putting God first and prioritising. God, Family and then work. Figuring out how to manage all things and balance all things. For me – Tysabri is a gift – full of blessings. And yes, I do test positive for the JC Virus. I have since day one. I have recieved #43 infusions.
For me, I keep a close watch on daily symptoms…a weakness in my balance is not something I take lightly. I really monitor it – because I don’t want to risk that being a symptom of PML, that’s hidden. It’s a kitty cat in the room that I have to pay attention too. Not so much a white elephant that I don’t understand or that I ignore. I hope you won’t ignore your PML or JCV like it’s a white elephant. Knowledge is power – you should emplower yourself. Visit sites and learn, call the TOUCH program and ask questions, don’t leave your docors office or infusion center next month until you feel like your fully understand all you need to understand. And by all means, don’t let them brush you off with hurried answers….get the answers you need and derserve – remember YOU are the patient and YOU are paying to be there!
Tame your Elephant.