Tag Archives: Disease modifying drug

Time for a new drug. Next stop, Gilenya!

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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.

To Ampyra or not to Ampyra?

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Multiple sclerosis medications fall into two general buckets.  The first, which is the type which gets most of the attention, are known as disease modifying drugs (DMD’s) or disease modifying therapies (DMT’s).  These drugs aim to slow down the progression of the disease but do not directly treat any of the symptoms.

The second group does the exact opposite.  They do nothing to change the course of the disease but they try to treat a particular symptom that the patient may be experiencing.  Examples include steroids to help speed up someone getting through a flareup or Viagara if the individual has lost the ability to perform sexually.

Luckily to date, I have not had to use any drugs of the second group.  However, one of these drugs, Ampyra, has come up numerous times in conversations with my neurologist.  Ampyra aims to help damaged nerves function better.  When your immune system attacks the myelin coating on the nerve cells, potassium leaks out.  The ampyra somehow blocks this, enabling better transmission of the signals.

Unfortunately, Ampyra only seems to work for 35%-40% of the patients that take it.  We decided to try it and see if I am part of that lucky group.

Looking online you will see user reviews that are either 1 star or 5 stars with little in between.  If it works, it is miraculous.  People write of going from a wheelchair to a walker to a cane.  But for most people, it does nothing at all.  My neurologist said that it seems to work best on patients that are really affected by heat.  Fortunately or unfortunately, that is not me.

The producers of Ampyra say that it can take up to six weeks to work.  They provide you with a two month trial dose free of charge to try and see.  My Doctor however says that if it is going to work, you should start to notice improvement within days.

So what could be the downside of trying it and seeing if it works?

First is cost.  It’s something around $1000 per month.  Luckily I have pretty good insurance so that wasn’t an issue.

The second is that this is not aspirin.  The chemical in the drug is also used as bird poisson.  It can cause some serious side effects including seizures.  The chance of seizures goes up considerably if you take more than the recommended dose.  The pill is taken twice a day, no less than 12 hours apart.  I found this part to be somewhat stressful.  What started as 8am and 8pm then became 9 and 9, 10 and 10, etc as I forgot to take the pill at the exact time.  Eventually I was having to stay up to take the dose or just skip one and start the cycle over again early the next morning.

Six weeks into the Ampyra I developed my first new symptom in a couple of years.  My disability in my left leg originally started as an odd tingling sensation in my thigh.  I woke up one morning with an identical tingling now in my right thigh.

My neurologist said that it is impossible to know if the Ampyra caused the new tingling.  However, at six weeks and no noticeable benefit coming from the drug, she had me stop taking it.

While I wish that I could have been part of the third that finds it to be a miracle drug, I have to admit that being on it made me a little nervous and dropping it was something of a relief.

Tecfidera – Day 30

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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

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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

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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 plan for a side effect free Tecfidera experience

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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?

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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.

Give myself a shot? Really?

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Now that the diagnosis of multiple sclerosis was made, it was time to talk about what to do about it.

There are two ways of using medications to treat MS.  The first would be taking something, steroids is an example, that would address the symptoms that you were suffering.  Since I had hardly any symptoms, this wasn’t something that I needed to consider.  At least not yet.  The second group are what are called disease modifying drugs, also known as DMDs.

The idea of DMDs is to slow down the progression of the disease.  Unfortunately none of them halt it completely.  They also don’t work the same on all people.  There are the lucky few who might find a drug that slows it down so much that it does effectively halt it.  Other’s may find that no drug slows it’s progression down at all.  Obviously, I hope that I will be in the former group, but only time will tell.

My doctor explained that there are about a dozen drugs currently approved with a variety of results and side effects associated with them.  For someone in my circumstances she had three that she used as baseline treatments.  I had done a little research before and knew that some of the newer drugs were taken as pills.  I told her to give her best recommendation for me and I would go with it, hoping that it would be a pill.

It wasn’t.

My doctor recommended Rebif.  I will go into more detail in another post, but basically it involves giving yourself a subcutaneous injection three times a week.  She said that it has a very long safety profile and that with any luck, it may be the only medication that I will need.

But give myself a shot?  Having someone else do it is bad enough.  I just couldn’t imagine having to stick a needle into myself.

In actuality it isn’t really that bad (more to come on this).  And for the first time at least I felt like I was doing something for my disease.  It was the most empowered that I had felt in a long time.

At a later appointment I asked doc why she went with Rebif instead of Tecfidera, which is a new popular pill?  She replied that treating MS is a marathon.  At some point we may have to switch medications.  When that time comes, it is much easier to switch a patient from an injection to a pill than the other way around.  I couldn’t disagree with that.