Tag Archives: Gilenya

I’m back. A bit more wobbly. But back.

It’s been more than six months since my last post.  I’ve just been really busy.  But it’s time to dust off the keyboard again.

What’s happened in the last six months?  Not a lot new with my MS, actually.  Just a little more progression with the disability.  The focus has really been on my family and my job.

My MS is still a secret to all but my closest family.  But that secret is getting harder to keep.  I now wobble and stumble quite a bit more.  I am sure that to some onlookers, I must look like I am drunk.  When walking a short distance, such as across the room, I can still hide it ok if I concentrate.  For longer distances, it becomes a little more difficult.  It starts to become obvious that I am not walking in a straight line.  Steps have also gotten a lot harder.  Again, if it’s going up five steps to enter into a building, no problem.  But if it’s hiking up a few flights, it is difficult.  Not impossible.  Just difficult.

I have had a few instances of colleagues commenting on my limp.  I have handled it by lying, claiming an injury.

The disability is not consistent.  There are days that I hop out of bed and feel pretty good.  There are other times where I am dragging my leg behind me like a log.  Fatigue is the biggest factor in how well I walk, by far.  Oddly, standing in place such as in a line, is more fatiguing and affects my walking more than walking itself does.  My theory is that to stand balanced requires many tiny correcting signals from the brain.  When you have MS and the transmission of the signals is challanged, I imagine that the number of corrective signals goes up considerably.  Exhausting.

I am still on Gilenya and tolerating it well.  It is super easy to just pop a pill each morning.  I’m not sure that it is helping, but it is easy.  The next wonder drug on the horizon that my doctor is already mentioning is Ocrelizumab.  The exciting news with this drug is that it’s phase III trials look promising for primary progressive MS, a version of the disease where there is currently no existing approved drug treatment.  They plan on applying for FDA approval early next year.

I adopted a version of the Paleo diet.  The jury is still out, in my opinion, of just how much diet can help you with MS (beyond being healthy in general), but I did shed 23 lbs on it and feel great.  That warrants a post of it’s own.

My plan is the same.  I hope to keep working as long as I can.  Hopefully forever.  As before, that means there is little reason to bring up my affliction with coworkers.  They will pick up on it soon enough.  I work in something of a shark tank.  I don’t need any of the other sharks questioning if I am all there from a cognitive perspective.

I promise not to take another six months to post.  I have a few topics stored in my head to write about so please stand by.

Having a cold on Gilenya, or pressing on the gas and brake at the same time.

My preschooler came home the other day with a respiratory virus, as they often do at that age.  I have now been on Gilenya for a month so it would be a good test of how my body could handle it given that 80% of my lymphocytes are imprisoned in my lymph nodes.

At first it seemed that I had dodged a bullet.  I was the only one in the family to have not contracted it from our little one.  And then it hit me.  Hard.

It’s the sickest that I have been in a while.  For days, I just laid in bed, coughing up a lung.  I was so weak that it greatly affected my MS.  Usually, I can still walk ok; just a little wobbly.  On day two of the bug, my left leg stiffened completely and I lost control of it.  I couldn’t walk.  I could barely stand.

Luckily in the days since it peaked, my walking is slowly returning to normal(ish).  However, it got me thinking……     As we were chugging airborne, gobbling down vitamin C gummies and sucking on zinc lozenges, all of which are supposed to aid our immune system, I was simultaneously taking another drug to intentionally suppress mine.  It is a lot like pressing on the gas while standing on the brake pedal with your other foot.

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.

Okay. Maybe it’s not PPMS after all.

In my last post I was expressing concern that my MS might not be the remitting recurring type that most people get, but might be another form called primary progressive.  This is a problem in that there are currently no disease modifying medications approved for PPMS.  One drug for RRMS, Gilenya, was in late trials for PPMS and many people had their hopes pinned on it.  My doctor had been talking about switching me from Tecfidera to Gilenya anyway so my thought was that I might be covered whichever form that I actually had.

Unfortunately, the day before my doctor’s visit, Novartis announced that the Gilenya trial for PPMS failed.  It did not have a statistically different effect than the placebo had.  I brought up the possibility of PPMS with my doctor.

My doctor made a case that I do not have PPMS and that it makes sense to treat it as Secondary Progressive MS.  This is the form where a person has remitting recurring MS and at some point it doesn’t remit anymore and gradually gets worse.  My original MRI scans showed active lesions on the brain and were more typical of RRMS.  Then I got on disease modifying drugs fairly early.  She felt that this may have prevented new flareups that are common in RRMS.  It’s just that my initial symptom never completely remitted, which can happen sometimes.

Given that there are not any different treatment options available for PPMS, I guess that sounds good to me and we will go with it.