Tag Archives: Tysabri

Time for a new drug. Next stop, Gilenya!

Tecfidera has been a breeze.  Just pop a pill twice a day and no needles.  I didn’t have any side effects so it has been especially easy for me.

The only problem is that during the ten months that I was on Tec, my disability steadily got worse.  My doctor said that in cases like this, we usually have to take something that tamps down the immune system more strongly.  With luck, that may help to slow down the progression.

Tysabri would be an obvious option except that I am JCV+, making it risky for me.  Doc said that our next best choice was Gilenya.  She said that while it is still a little unclear where Tecfidera falls on the efficacy spectrum, it seems like it is closer to down by the interferons.  Whereas, Gilenya seems to be closer to Tysabri.  She has a number of patients that are in worse shape than I am, that are getting very good results on it.

And it’s a once-a-day pill so no needles.  Sign me up.

To start Gilenya, you need to go through a battery of tests to see if you can take it.  But if you pass, it is easy to take with few side effects.  The battery included blood tests, a pulmonary exam, opthalmological exam, EKG and a dermatologist exam. I’m probably forgetting something else in there.

When you take your first dose you have to be in a clinic where they can observe you for six hours.  The drug can cause your heart rate to drop, particularly after the first dose and they want to make sure that your body adjusts and starts to recover from it before they release you.  From doses two and on, you should be all set to take on your own.

Gilenya can also cause macular edema, hence the ophthalmological exam to establish a baseline before taking the drug.  If a patient develops this, it will normally occur within four months.

Gilenya works by trapping a type of white blood cells called lymphocytes in your lymph nodes.  The idea being that if they are trapped there, they can’t swim around munching on your myelin.  Unfortunately, that also means that they are not out there battling viruses either, making you more susceptible to serious infections.

I passed my exams and we went for it.  More to come as I will provide an update on the first month in an additional post.

Tysabri Off the Table

Like all of my posts, the following is my layman’s understanding of a drug and it’s issues.  My understanding may not be accurate and please don’t rely on it for medical advice.

Tysabri is one of the more effective disease modifying drugs used to treat multiple sclerosis.  It is a once a month transfusion.  That would suit me well given my work travel schedule.  I would gladly waste an afternoon once a month so as not to have to bother with pills or shots.

But there is a catch.  If you have been exposed to a virus called John Cunningham virus, or JCV for short, Tysabri increases the risk of developing progressive multifocal leukoencephalopathy (PML).  PML has no cure and will likely kill you.

Now keep in mind that even if you test positive for JCV, the odds are small that you will get PML on Tysabri, but they do exist.  Even a small percentage chance doesn’t quite seem like a good risk reward ratio if the loser of the trade dies.

If you test negative for JCV and go on Tysabri, you will need to get regular tests to make sure that you didn’t pick up JCV along the way.  If you did test positive, you could have had it up to a month since your last test and I understand that Tysabri can hang around in your system for a couple of months after discontinuation.  That gives you roughly a three month window where you need to pray that you don’t get PML.  Not likely, but scary nonetheless.

While scary, Tysabri is one of the more effective treatments.  Scan the blogs and twitter and you will find countless people that have had great results with it.  That makes it a tough choice.

As readers may know, I was on Rebif but developed an allergic reaction to it.  Yesterday I met my MS doctor to discuss our next treatment.  We reviewed my recent blood test and found that I tested positive for JCV.

Mixed feelings.  Disappointment because it means that one of the more effective treatments is no longer an option for me.  But at the same time, relief.  Taking Tysabri off the table as an option means that I don’t need to bother with the anxiety ridden debate of whether the effectiveness is worth the risks of the drug.

Coming up next, being offered a choice…..