The first thing people ask me is, “Why did you choose the treatment you are on?” Well, there are many reasons. Some physical, some emotional.
When I was first diagnosed I was started on Betaseron. I had to wait for my name to be drawn in the lottery. Finally, it came up and I started the injections. It sucked. Here I was, 23 years old, and having to stick myself every day. But I persevered. Shot into any little piece of fat I could find. Until the lesions started. What started as itchy red spots quickly became open sores and scars. Turns out I had an allergic reaction.
Luckily, soon thereafter Avonex hit the streets. So I switched. And I thought, “Once a week! Perfect! Not everyday!” Until I saw the size of the needle that I needed to stick in my thigh. (Coincidentally, I use the same needles on my horse for his meds). And now these shots were intramuscular so it took a little more prep. Mental prep. I would do the “one, two, three . . . OK, let’s start over.” These sucked too. Avonex worked for some time and then the attacks started again. I did go 7 months attack free.
Then Copaxone hit the market. So I tried that. Supposed to be the new wonder drug. Back to everyday shots in fat. Since I had scar tissue from my Betaseron episode, I didn’t have alot of spots left. The the meds all made me lose more weight. The Copaxone did OK, but we coupled it with Imuran, a drug that is used in some cancer patients. The side effects were awful. So these too, sucked.
Then I went off everything to get pregnant. Luckily that happened quick and I felt great while pregnant. But that ends after the baby comes! So as soon as I stopped nursing I went back on the Copaxone and coupled it with Cell Cept. This drug is used in drug transplant patients to combat rejection. Everything was about keep the immune system suppressed. I was still having attacks about every 4 months, so we upped the dosage of the Cell Cept to as high as we could. Still having attacks.
Then, ta dah! Tysabri came. I was one of the first ones on it the first time it came out. Then some people got sick and some died from PML (Progressive multifocal leukoencephalopathy is caused by the reactivation of a common virus in the central nervous system of immune-compromised individuals –from: http://www.ninds.nih.gov/disorders/pml/pml.htm.)and they pulled it off the market. But after about a year it was back (See article by Elan: http://www.elan.com/News/full.asp?ID=1028933) There were so many of us that this drug was our last chance. I was started having problems walking and was seeing a decline in my health. I knew it was a chance I had to take.
So after signing my life away (figuratively and literally) I signed up for Tysabri, waiting for the insurance to tell me it would pay the approximate $24,000 a year. So I am doing that now, for almost a year. I am having my first attack now, in the 11 months I have been on it. I feel better overall, by not having all of those drugs in my system. I still have a hard time maintaining my weight, but that is a small price to pay. There are new drugs coming out all the time.
When other MS patients ask me why I choose what I did I tell them, “I didn’t have any other choices. But if you do, explore the options with your doctor. He or she can tell you what might work best for you.” But I also have to say taking care of yourself: exercise, watch you diet and try to stay positive go a long way to piece of mind!
My thoughts for today -Keli