Tag Archives: Tecfidera

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.

I’m back! An update

It has been more than four months since I last posted.  I haven’t been missing in action because of anything bad happening.  Rather, it has just been very busy around here lately.  My business has had me traveling quite a bit.  My wife’s business has picked up considerably.  The kids seem to be involved in more activities at any given time than I think even existed when I was a kid.  All of these are positives and things to be thankful for.

There is not much new to report on my MS.  That’s a good thing.  My left leg has gotten a little bit worse in terms of being a little weaker and less coordinated.  I’ve also noticed that my sense of touch in my left foot has deteriorated a little.  But all in all, it’s been business as usual.  Luckily, I have not developed any new symptoms.

My walking is such now that anyone looking for it could probably notice that I wobble a little.  However, it is slight enough that I doubt that anyone from work would be able to notice that something wasn’t right.  I can still mask it if I concentrate.

The Tecfidera has been great.  I really hope that it is working because it is so easy to take.  No needles; just pop a pill twice a day.  I was lucky and never had a single side effect from it.

My blog still gets a lot of visitors, despite no posts in months.  Unfortunately the spam bots have found it and I had to clean out several hundred comments waiting for approval.  All were spam.

I will be looking to start posting more regularly again and thank you to those visitors that have been coming back despite the lack of new content.

Tecfidera – Day 30

As I wrap up my first month on tecfidera, I thought that I should put in a final post to close the book on the topic of starting with the drug and it’s associated side effects.

Thirty days into it and zero side effects.  No abdominal issues, no flushing, no anything.  Please see my prior posts for my strategy to mitigate the common side effects.  For me at least, they worked.  I now just take the pill each day after breakfast and dinner.  Easy-peasy.

Now it’s just a matter of waiting and seeing how the disease progresses on it.  I’m keeping my fingers crossed as to it’s efficacy.

Tecfidera – Day 12

At the risk of jinxing it, I am going to suggest that I am out of the woods in regards to the side effects that plague many tecfidera takers when they first begin treatment.  Almost two weeks into it, I have not suffered a single side effect.  In fact, I have felt really good these last two weeks on the drug.

Repeating a few factors that may have contributed to the success:

  • I took a full adult dose aspirin (not a baby one) half an hour before every dose.  I dropped this after a week, with no negative effect.
  • A daily probiotic.  I began taking Culturelle five days prior to beginning the tecfidera.  I have a slew of coast to coast and overseas flights coming up for work so I will stay on this for at least another month to play it safe.
  • I’ve taken every dose on a full stomach.  I eat a lot of proteins and fats anyway so I didn’t modify my diet for the tecfidera.

Popping a pill at the end of my breakfasts and dinners is SO much easier and more convenient than giving myself a shot.  I really hope that it is as effective at slowing down my MS progression.  Time will tell.

Tecfidera – Day 4

I am a lucky guy in many respects.  So far at least, it appears that my luck extends to being able to tolerate Tecfidera well.

Day 4 of taking the pill and I have yet to have a side effect at all.  I don’t want to jinx it, but so far, so good.

The next hurdle will come in three days when I double up the dosage from the starter pills to the full dose.  I know that some people get side effects at that point.  But I have to believe that each day that I go without issues, the probability of developing them decreases.

Again, my strategy for no side effects was as follows:

  1. Start taking a daily probiotic a few days before starting the Tecfidera.
  2. Take a full adult aspirin half an hour before my dose.
  3. Take the dose on a full stomach.

I actually had a minor case of queasiness with my first dose of the probiotic, but that could have been coincidence.  It never re-occured.  I skipped the aspirin last night with no negative effect.  I took one this morning but will probably skip them going forward, now that I am past the first few days.

The next update will come after I’ve dialed up to the full dose.  Good luck to any following me down the tec path!

My first Tecfidera dose

My starter pack which includes the first month’s dose of tecfidera arrived yesterday morning while I was at work.

During the day, a nurse from the mail order specialty pharmacy called me to ask how it was going on the medication and to read me their educational material.  When I explained that it was supposed to arrive today she asked me when I would be taking my first dose.  I replied that evening.  She advised me to wait to take it in the morning.

When I asked her what difference it makes since I will be taking doses every twelve hours?  she replied to take the first dose in the morning so that I could get two doses in the same day.  I asked how my body knows between which two doses the calendar page flips?  She scrambled to quickly read through her prescription sheet for the drug, focusing again on the “taken twice daily” line.  Sigh…

I am under a time crunch to get going on this drug.  I’ve got a short window of time between business trips to see if I can get past any of the side effects that patients experience when they first start tecfidera.  When I only have a week until I have to get on a plane again, I am not going to waste a day of it waiting based on faulty logic.

Following my side effect mitigation plan from my last post, I have been taking a daily probiotic for five days now.  Last night when I got home, I took a full adult dose of aspirin as I started dinner.  Recently, my wife and I have been eating much more healthy (the subject of a future post), but for this week I am gorging on fatty foods to limit the chance of the side effects.  I ate three slices of a sausage pizza.

Then I took my pill.  We sat down on the sofa and loaded up a movie as we watched to see what happens to me.  Would I turn into a bright red lobster?  Or run into the bathroom repeatedly vomiting?

A twitter follower stated that taking chocolates helped her, so while we were waiting, we broke out a box and sampled a few.  And then….

Nothing happened.

It’s just the first dose so I don’t want to jinx it, but so far the plan of probiotic, full strength aspirin and a stomach full of fatty foods seems to be working.  I will give periodic updates as to how it is going over the first month or so on the drug but for now, I am smiling (and keeping my fingers crossed!).

My plan for a side effect free Tecfidera experience

The specialty pharmacy that my insurance company uses called to let me now that they will be overnighting my first dosage of Tecfidera for delivery on Tuesday.  Tecfidera is known for initially causing flushing and abdominal distress in patients that usually gets better over time.  The key is how to get through that first month on the drug.  My personal situation is further complicated because my MS is a secret from my workplace, and I have a pretty hectic travel schedule with my job.  Bad flushing, nausea and diarrhea could be a real problem.

If I get the pills on Tuesday, I will have a week to try them before I have to hop on an airplane next.  Based on the recommendations from my doc and the hospital’s pharmacist who works with a lot of patients on tecfidera, the following is my plan:

  • Take an aspirin a half hour prior to the pill.  This helps with the flushing.  Many on the internet take a baby aspirin.  My doctor recommended a full adult dose.  I will stick with this for at least the first week or so.
  • Eat a full meal with fats and proteins just prior to popping the pill.  This slows down the absorption of the medicine quite a bit.  I will stick with this indefinitely.
  • Take a probiotic.  This is a tip that you don’t hear often.  The hospital’s pharmacist insisted that people who take a probiotic while starting on tecfidera, don’t have any of the stomach issues.  The probiotic is a once a day pill that supplements the good bacteria living in your gut.  I bought an 80 pack of Culturelle which will take me through the first two months on the tecfidera.  Hopefully by then my body has adjusted to it.  I checked with my doc who said that this is fine.
  • Be a guy.  My doc said that in general, her male patients seemed to have fewer side effects.  Maybe this is because it is the same dosage but being absorbed by a larger person?

I will write new posts next week as I start the medication to let readers know how the plan is working.

A month in the bathroom or injections for life?

I’m exaggerating, of course.  But maybe only a little.

Having been diagnosed with multiple sclerosis, my first disease modifying drug that my doctor chose was Rebif.  From my recent MRI, it seems to have been working well.  Unfortunately, I had an allergic reaction that required me to drop it.  On Friday, I met with my MS neurologist to discuss what we would try next.  My doctor gave me two choices, Copaxone or Tecfidera.

Copaxone is the most prescribed medication for MS.  Until a few days ago, it was a daily sub-cuteaneous injection.  They were just given approval to offer it as a three time a week injection, similar to Rebif.  Copaxone has been around for a while and has a well known risk profile.

Tecfidera is the new kid on the block, being just approved for MS in the USA in March.  A twice a day pill, it works in a different manner than the popular interferon drugs and has had impressive results in studies.  For side effects, many of the users experience flushing and abdominal issues including nausea, abdominal discomfort, vomiting and diarrhea.  The good news is that for most people, these effects occur at the beginning of taking the drug and decrease or disappear over time.  The percentage of people suffering these side effects drops off dramatically going into the second month of use.

So if all else were equal, would I rather have nausea and diarrhea for a month and then have the convenience of just popping a pill twice a day, or not suffer the abdominal issues but be stuck stabbing myself with needles, possible forever?

Out of curiosity I asked that question of my mother, father and wife.  We were aligned by gender.  My mother and wife would opt for the daily injections to not have to suffer the abdominal distress.  My father and I were of the opinion that we could tolerate anything for a month and that would be preferable if it meant not having to give ourselves shots on an ongoing basis.

I chose Tecfidera.  Actually, not because of the pill versus shot question.  Rather because my wife (highly educated in this topic) and I both felt that we liked the science behind how the drug works, and the efficacy, better.  It seems to offer an attractive results vs. risks ratio.

With any luck, I will be part of the half of patients that do not suffer the beginning side effects.  If I’m not that lucky, I will keep an old Rebif syringe on the counter as motivation to stick with it through the adjustment period.