Surviving Avonex Therapy for Multiple Sclerosis
The problem with myelin destroying itself is that the nerves and brain are then basically unprotected. Then, they develop scar tissue that blocks nerve function. In my case, because it is relatively new and mild, it means that I have issues with my balance and sometimes the feeling in the my right leg. Last summer, it also meant I had some double vision out of my right eye. That cleared up.
Though there is no cure for MS and no known way, yet, to repair the damage done when the disease is active, modern medicine has been able to produce drugs to minimize the occurrence of the relapses. The idea is that if the disease isn’t active, it can’t do damage to the nervous system and the symptoms don’t get any worse.
That’s why my neurologist recommended my beginning Avonex therapy. Avonex is the brand name for one of the types of interferon beta therapies designed to help minimize the number of relapses. The clinical studies seem to indicate it causes a significant reduction in them.
I was not thrilled with this idea, largely because interferon therapy involves shots, lots and lots of shots. The doctor and I discussed the options available and Avonex seemed like the most reasonable option. Other drugs required shots more often, like every two to three days, or had massive side effects. The side effects for Avonex didn’t sound that bad. The most common side effects are nausea, headaches, tiredness, and basic flu-like symptoms.
To be honest, none of that sounded as bad as the thought of getting stuck with a needle once a week, so that’s the course we opted to take.
Let me start by saying that it appears, so far, to be successful. I have not had any new symptoms and the ones I have that are related to the MS don’t appear to be getting worse. In fact, some, like the double-vision, cleared up. And, that is the only reason that I can convince myself every week to manage to make it through another shot day. Shot day, which used to be known as Thursday, is nothing short of pure hell, mostly because it is so unpredictable.
First, there was the actual process of learning to get the shot. Because it requires weekly injections, the drug company offers training so patients can learn to self-inject. Did I mention that I hate needles? I’ve often told people that the worse part of child birth wasn’t the labor pains, it was all the needles they insisted on stabbing me with.
The option of self-injecting seemed like a bad idea, so I developed a back up plan. I worked in a doctor’s office. Surely, I could convince someone there to give me the shot, right? Right.
Still, I took the training course, assuming that there might come a day when I would have to inject myself. I hope it never comes to that because my fear of needles has not gotten better. I sat through the training with a very nice home health nurse who tried to ease my fears and teach me all the safe ways to handle my medication. I became adept at mixing the medicine and got ready to fill the needle for my first injection.
That’s when I learned without a doubt that I was never intended to give anyone a shot. Ever. To fill the needle I simply had to take the cap off the needle and stick it into a small vial of the medication. Instead, I was shaking so much that I removed the needle cap and scraped the needle along the fleshy part of the inside of my hand, stabbing myself with the needle.
I contaminated the needle and left myself with a nasty scrape and puncture wound. O even bent the needle. Clearly, I was not intended to give myself a shot.
I tried to convince my doctor and my husband and everyone else who insisted that I had to go ahead with the Avonex therapy that this was a sign and I was clearly not supposed to take this medicine. No one believed me.
They did, however, agree that if I could find someone else willing to give me the shot, it might be a better idea than trying to do it myself. My friend and co-worked Shawn was willing to accept the job. For more than a year now she has faithfully given me my weekly shot except when she was on vacation. That week, I got a public health nurse to do it for me.
Once the trauma of my first, and only, attempt at self-injection was over, I began getting my injections. This created an all new problem, dealing with the side effects.
Avonex counselors recommend taking the medication close to bedtime, so that perhaps you can sleep through the side effects. They say to take your injection at a time when it will be least disruptive to your life.
I say, “ha”.
That might have been possible if I could self-inject, but for me, it wasn’t an option. And, well, in those first weeks if I had been sleeping through the side effects, I would have had to sleep for a week. Within an hour of the shot, even now, I have a raging headache. I can manage this, somewhat, by planning ahead and taking over-the-counter painkiller about half an hour before I get my shot. At first, though, this was unbearable.
Before starting Avonex, I had never had migraines. For the first two months I was on the drug, they came like clockwork, about 2 p.m. every day and were more intense the first two days after the shot. My neurologist put me on an additional medication, Topamax, to fight the migraines, but I was resistant. I hated the idea of taking a medication to fix the side effects of another medication. He also suggested putting me on a drug to fight fatigue, but I flat-out refused on that one.
So, for the first couple months, I ate Excedrin migraine medicine like candy and slept from the time I got off work on Thursday nights until just before work on Friday mornings. Then, on Friday nights after work, I would fall back into bed and sleep for 14 to 16 hours. This was tough as I was determined to keep working through this, but I made it.
After a few months, I was able to stop taking the Topamax altogether and minimize the over-the-counter migraine medicine.
I also found I have an uncontrollable thirst after I take my Avonex. My boss would laugh that on shot day I would often have a bottle of water and a bottle of some sort of caffeinated drink (caffeine helps with the headaches) at my desk and would become a “two-fisted drinker.”
Eating on shot day also became a challenge. It wasn’t that I was nauseous before I ate. No, I would be hungry and have that feeling of, “If I could just eat something, I’d feel much better.” That feeling was always wrong. In the end, after much experimenting, I found that eating a good-sized but extremely low fat lunch before I got my shot helped me to feel better.
Greasy, heavy foods always made the side effects worse.
And, despite the fact that I was always thirsty and drank tons of water after my shot, the on-going side effect that I have had, certainly not listed as the common ones, is a continuing battle with bladder infections.
I have been treated for four in the last year, most in the first six months after I started on the Avonex. More recently, I have found that I have fewer flare ups if I drink cranberry juice, and lots of it, the days around shot day. I drink about a half gallon of the stuff between Wednesday and Friday each week.
After a year of consistent shots, I find these side effects are much less intense than they were at the beginning, but if I mess up, my body reminds me in the harshest way.
For example, last month, Shawn, my shot giver, was on vacation and we ended up taking my shot a day late. For the first time in months, the headaches were back and in migraine style.
Another time, I forgot to warm my medication to room temperature before the shot. Avonex must be stored in the refrigerator if it’s to be kept for any length of time, but company pharmacists recommend letting it to warm to room temperature before taking the shot.
I learned why. First, the shot, which burns as it is injected anyway, hurt worse. Second, the side effects hit me like a ton of bricks that week. I went to bed at 3 p.m. on a Thursday and slept most of the weekend. For two days, I had a raging migraine. I felt like crap for most of the week. Dragging myself up and down the basement stairs to do laundry became a daunting task.
Now, I warm my medicine up.
We have also learned to lessen the pain of the injection by changing needles after we fill the syringe. Using a clean needle that hasn’t been dipped into the medication eases the pain and the irritation at the injection spot.
The injection site is still a bit sensitive, as the medication is so caustic that it causes tiny muscle tremors around the injection site for about 15 minutes after I get my shot, but the even those seem t be lessening with time.
All in all, Avonex therapy has taken some adjustments to my lifestyle, to my eating schedule and sleeping patterns, but as time passes, it gets better. And, it appears to be working. Since the other option is losing the functions of my nervous system, I’ll take the headache-inducing shot any day.
