This was to be a light-hearted and fun post but as it often does, MS has decided to change my plan. So, in my efforts to be transparent, I am going to change the topic and talk about something that I am now facing. While I don’t like to focus on negatives, I do want to be authentic so I am just trying to keep it real, hopefully my story will help someone else who may be faced with the same difficult decision.
Most of the time I just go along, day after day just living my life and minding my own business being very comfortable with the status quo as far as MS is concerned so when I unexpectedly get a call from my Neurologist nurse, it is unnerving. But first, let me back it up for you:
Part of my MS treatment plan is taking a DMT (disease modifying treatment). I take a drug called Tysabri (generic name) or Natalizumab every 4 weeks and the protocol around Tysabri is a twice a year blood test to check for the JC Virus. I have always known about the risks associated with this immune suppressing medication, so the test is nothing new to me. During the 12+ years I’ve been on Tysabri I have had nearly 30 of these tests.
What is the JC Virus you ask?
Web MD defines it as this: The JC virus, or John Cunningham virus, is a common germ & more than half of all adults have been exposed to it. It doesn’t cause problems for most people, but it can be dangerous if you have a weakened immune system and there’s no known way to keep yourself from getting it. Experts don’t know how it’s spread, but it’s thought that many people pick it up as kids through food or water that has the virus in it. It settles in your urinary tract, bone marrow, tonsils, or brain. It can stay there for years, and most people never know they have it…….. that is unless you test positive for it, and you are on a medication like Tysabri. I have gone 12+ years on Tysabri and tested negative for the JC Virus, until now. When you test negative for the JC Virus, you can usually just happily carry on with your Tysabri treatment, but when you test positive, that stops immediately.
What’s all the fuss about for a small germ that many people have?
So, here’s the thing, many people with Multiple Sclerosis live with a pretty big fear of three little letters……PML. In fact, the very mention of PML (Progressive Multifocal Leukoencephalopathy) can be terrifying especially for those of us who take DMT’s like Tysabri. The fear is real because quite simply put, PML usually causes severe disability or death. In fact, PML has a mortality rate of 30-50% in the first few months following diagnosis and those who survive the disease are often left with severe neurological disabilities. And now that I am JCV+, I will never return to JCV- so that takes away some of my treatment options.
What is PML?
From Web MD: PML is a rare brain disease caused by being infected by the JC Virus. It can also be caused by the re-activation of the JC virus if you are a carrier. Most people can have the JC virus and never know about it. There aren’t any physical symptoms that you would notice. In fact, it’s been estimated that between up to 90% of the population has been exposed to it. JC only really becomes a problem if you have a compromised or weakened immune system. When your immune system is comprised, the JC virus may not be kept in check, which can cause it to reactivate. It can then damage the brain and attack myelin, just like MS, but more aggressively. That destructive process once the JC virus crosses into the brain is PML and it’s not something you want to happen, because as I mentioned, it usually leads to death of severe disability.
The reality is gone are the days of my being JCV-, and here are the days of being JCV+. I’ve had 12 years of virtually no risk of PML due to my negative JCV results, but now it’s a whole new ball game and I am freaking out. It is taking all my energy just to manage my anxiety around this new challenge.
One of the tricky issues is that early on with PML, the symptoms are similar to those of MS. PML damages nerves by demyelination, and causes some similar symptoms, such as weakness, visual problems, impaired speech, and cognitive problems. If left untreated, PML can quickly become very serious, and even if it is caught early, it can cause severe and permanent disability and often death.
So, what’s next for me?
I really don’t know, in fact, I am waiting for a call from my Neurologist as I sit here writing this. I had an emergency MRI and I am sure she will give me the results as well as discuss options for future treatments and testing for PML. My hope is that the MRI will rule out PML and I won’t need a spinal tap or blood transfusions to flush the Tysabri out of my system, but where I go from there, I have no idea. I’m sure we will talk about the risk vs reward with Tysabri or other medications, but I am only guessing at this point.
I have had the MRI and thankfully there is no sign of PML, however the Neurologist has told me that given my high JCV number, she is not comfortable leaving me on Tysabri so we are considering giving a medication called Mavenclad a go. This medication is a little bit scary but I am going on faith that it will work wonders for me – my Neurologist has never steered me wrong.
Mavenclad works by gradually reducing the numbers of certain types of white blood cells (T and B lymphocytes). These are thought to be involved in the abnormal immune response which attacks the myelin coating of nerve cells that causes the damage associated with MS.
The Pro’s as I see it of Mavenclad
One of the positives for Mavenclad is the convenience of a pill rather than an IV infusion that you are tied down to. In the first course you take Mavenclad pills for up to five consecutive days in the first month and for up to five consecutive days in the second month. The second course is taken 12 months later; again, taking pills for up to five consecutive days in the first month and for up to five consecutive days in the second month.
Experts are not sure exactly how Mavenclad works (which seems weird or am I the only one wondering how that can be?) but suggest it involves cytotoxic effects on B and T lymphocytes through impairment of DNA synthesis, which decreases their numbers. B and T cells are immune system cells that can attack nerves and lead to inflammation in MS. The number of B and T cells will begin to recover after each yearly Mavenclad administration, but this may take several months and levels may not go back to pre-treatment values.
- Upper respiratory tract infections, a headache, and decreased white blood cell counts are the most common side effects reported.
- Causes a dose-dependent decrease in lymphocyte counts. The lowest counts occurred 2 to 3 months after the start of each treatment course.. Decreases in other blood cells, such as neutrophils, and hematological parameters have also been reported.
- Can reduce the body’s immune defense and increase the risk of infections such as herpes zoster, pyelonephritis, and fungal infections.
- Boxed safety warnings for Mavenclad include the increased risk of developing cancer with treatment and the possibility of birth defects in an unborn baby.
- Latent TB infections may be activated with Mavenclad treatment.
- Treatment with Mavenclad may increase the risk of malignancies (cancer).
- May increase a person’s risk of developing progressive multifocal leukoencephalopathy (PML) a serious viral infection. Symptoms include progressive weakness on one side of the body, limb clumsiness, vision disturbance, changes in thinking, memory, and orientation leading to confusion, and personality changes. (I definitely need to follow up on this!!)
- Dosing is based on weight and ranges from 40mg (4 tablets) each day of the cycle for those weighing 40-50kg to 100mg (10 tablets) each day of the cycle for those weighing 110kg and above.
- And, the big kicker……..MAVENCLAD® costs $3,212 per tablet!!! And I thought $5500 per month for Tysabri was ridiculous. I can’t imagine not having medical benefits to offset these ridiculous costs,
Clearly, I have some things to think about, some questions to ask and some discussions with my family to see if this is the road I want to go down.
Wish me luck!
PS: If there is anyone reading this that has tried Mavenclad, I would love to hear your experience!