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.

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