Tag Archives: Medication

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.

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!).

R is for Rebif. And Rash!

I started on Rebif for my multiple sclerosis almost three months ago.  Rebif is a three times a week injection that you give yourself.  The most common side effects are flu like symptoms and irritation at the injection sites.  I experienced neither.

The first two weeks were fine.  Initially you begin with a one fifth dosage.  The next two weeks they move you up to a half dose and I was still fine.  The fifth week I stepped up to the full dose and that’s when the reaction began.

Within a day of dialing up to the full dose I began to have a small but itchy rash on my chest.  I had been on a business trip and assumed that it might be from the hotel bed.  I could have been sensitive to the detergent that they used or it could even have been bed bugs.  If so, I would expect it to fade away with a little hydrocortisone cream.  However, it did not get any better.

I had read that with some other MS medications people may experience flushing or rashes, but that this often goes away after the first month or two.  I was hoping that this wold be the case too.  I called MS Lifelines, which is essentially a customer service help line staffed with nurses that is run by the pharmaceutical company.  They looked it up and could only tell me that in trials, 5% of the subjects developed rashes.  They couldn’t tell me anything further such as if it normally goes away over time.

I had an appointment with my MS doctor coming up so I stayed on the Rebif and waited to bring it to her attention.  By that time, it had spread a little and was still itchy, but more or less tolerable.

MS Doc didn’t think that it was anything serious but that tolerable or not, I shouldn’t have to go through life itching if I don’t have to.  She suggested stepping back to the half dose for a month to let the rash clear up.  Then we would slowly go back to the full dose in hopes that my body would have adjusted by then.

It didn’t work.  A month later, the rash not only didn’t go away, it has gotten worse.  It now covers most of my upper body and has moved from tolerable, well into the annoying camp.  We now have the following action plan:

  • Stop taking the Rebif.
  • See my primary care physician to see if I can get anything to help clear up the rash.
  • Give some blood again.
  • Pick a new treatment.

The blood test is needed because my last test a month earlier showed elevated liver enzymes.  This may be a result of taking the Rebif, but we want to be sure before we decide which treatment to try next.

Giving myself the injections was not as bad as I had feared.  That having been said, I am really hoping that the next one that we try is a pill!

Give myself a shot? Really?

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.