Wednesday, July 4, 2007

Progress, progress...?

After Halloween I could at least admit that I had MS, but now it was time to figure out my new medication. My doctor discussed the options with me and since I hate needles and wanted to avoid shots as much as possible we decided on Avonex.
Now, if you deal with MS, you know very well that all the treatments involve some injections. Avonex only requires an injection once a week, so it sounded like the best of the options. And, for awhile it was. Sort of.
The first thing that the folks at Biogen,makers of Avonex do for you is to send you a month-long supply of the drug. they do this while working with your insurance, or lack thereof, to figure out how to get you your medicine on a timely basis. Though the drug eventually caused me too many problems and I had to discontinue it, Biogen was a good company to deal with. They provide discounted or in my case, free, drugs for people based on their income. The only cost to me was shipping because it had to be shipped overnight so it could be kept refrigerated. That saved me almost $12,000 a year, since a month supply of Avonex costs about $1000. I paid $100 for the year's supply, $25 every three months for shipping.
The next nice thing Biogen does is contact your local home health care agency and have them come out to teach you how to give yourself injections. They recommend giving Avonex in the arms and thighs, or buttocks, rotating the injection site. A pharmacist with Biogen recommended always using the buttocks or thighs because the bicep can be too small to let the medicine disperse right. All I know is that when I used my arms as injections sites, I could not lift that armfor the next two days, and I'm not a small girl.
the nice nurse from our local home health agency came to my work and tried to show me how to give my self injections. I cut my hand trying to get the cover off theneedle, I was shaking so badly. Instead, I learned to mix the medicine, load the needle and call a friend for the injection. I worked in a doctor's office, so I got one of the technicians to give me my shot each week. It meant I got my shot at work, but it meant I didn't have to do it myself.
Right away, the Avonex caused little problems. I was sick as a dog about two hours after the injection. I developed migraine headaches for the first time in my life and I had a semi-constant kidney infection. After a year on it, I developeda tiny cataract in my left eye that my ophthalmologist said was most likely a drug reaction. The injection site was sore, especially if I forgot to warm the medication to room temperature before getting my injection, but most of it I learned to control.
The migraines disappaited a great deal after the first three months on the medication. And, I could control the remaining ill feelings on shot day by eating extremely light, low-fat meals and taking over the counter pain relievers and drinking serious amunts of caffeine about an hour before my shot. Still, I would often end up in bed about four hours after the shot and be done for the day.
As long as I was consistent with the shot day and time, the symptoms were minimized. If I had to vary my dosing schedule for whatever reason, I got hit hard with side effects. Still, the avonex worked. For two years now, I have had no relapses or progression in my MS. But last month I had to get off the Avonex.
I was suddenly struck with mind-numbing clinical depression and my liver function tests started showing depressed liver functions. My white blood cell count fell and so did my hemoglobin. My generic doctor and my neurologist agreed. Time to get off the Avonex. My blood chemistry has almost returned to normal and the depression has faded, but I worry about the next step in my medication. I've heard good things about copaxone, but I dread the idea of daily shots. Tysabri scare the bejesus out of me and well, I guess I'll just wait and see what else the doctor recommends.
In totally unrelated news, Happy Independence Day! I hope that soemday we will be able to celebrate national holidays again without an increase in security, but in the meantime, thanks to the Brits, who once again foiled the enemy. Some day, I am actually going to talk about stuff other than MS on here....I think I can now as you are basically up to date on the MS.

1 comment:

Kenny Scott said...

Depression is how my MS showed up in the first place. So, although we've each had it for totally different reasons, I empathise with how bad that period of your life has been. I was on drugs for the best part of 2 years for the depression and it wasn't that fun. Here's hoping that episode of your life is over and the next medication has less troubling issues for you.