Tag Archives: Drug

To Ampyra or not to Ampyra?

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 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 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.