My preschooler came home the other day with a respiratory virus, as they often do at that age. I have now been on Gilenya for a month so it would be a good test of how my body could handle it given that 80% of my lymphocytes are imprisoned in my lymph nodes.
At first it seemed that I had dodged a bullet. I was the only one in the family to have not contracted it from our little one. And then it hit me. Hard.
It’s the sickest that I have been in a while. For days, I just laid in bed, coughing up a lung. I was so weak that it greatly affected my MS. Usually, I can still walk ok; just a little wobbly. On day two of the bug, my left leg stiffened completely and I lost control of it. I couldn’t walk. I could barely stand.
Luckily in the days since it peaked, my walking is slowly returning to normal(ish). However, it got me thinking…… As we were chugging airborne, gobbling down vitamin C gummies and sucking on zinc lozenges, all of which are supposed to aid our immune system, I was simultaneously taking another drug to intentionally suppress mine. It is a lot like pressing on the gas while standing on the brake pedal with your other foot.
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.
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.