well... me and one of my best friends of 12 years both happened to get diagnosed with MS within a year of each other. We both picked the same neurologist and we both happened to make it to the phase three campath study.
The study qualification was intense.. lots of poking, prodding, degrading testing, and blood work. but we made it.
I wasn't sure up until the last minute that I was going to do it. The side effects are terrifying. I hate IVs and it involves a bigger lifestyle change than I realized. No piercings, no tattoos, no sushi, no unpasteurized dairy, i have to wash every fruit and vegetable.
So our first day was not fun. We showed up at 8:30 am, took a pre-infusion cocktail. It consisted of stomach meds, allergy meds, Tylenol, and some other stuff I never heard of.
Next came the IV. I got two sticks and ended up with it in my hand, ouch! Kristin ( my best friend ) got three sticks but ended up with it in her arm, so at least she has use of both hands.
So we are now ready for the drip. First comes a round of solumedrol. yucky metal taste, mixed with the jitters. Ate a ton of snacks and made my tummy upset.
Finally it was time for the campath. Neither Kristin or I know if we are getting a high dosage or a low dosage. The drip starts and we bear down for the next four hours having no idea what to expect.
We have a bunch of movies to watch, snacks, music, reading material, and comfy pillows and blankets. However the time passes slow. I start to feel disoriented, sluggish, achy, emotional and tired. Kristin got a massive headache and a similar reaction as I got.
Finally the four hours is up. By this point i am mentally and physically exhausted and drained.. but no horrible side effects. Kristin seemed the same but she still had a massive headache.
The drive home was tough. I was weak, vision was bad and my eyes kept wanting to close. when I got home, I crawled through the door and got into bed. I could not get comfortable at all. my body was weak, but my mind was racing! But I was still spaced out, could not focus.
The rest of the night was about the same. I was weak, tired, and disoriented.. that and starving, no matter how much I ate. I tried to go for a walk to give myself some exercise. It was hard to walk. I tried to watch jeopardy but my brain would not work. Finally I took some Valium and passed out around 8:45pm. I slept well until my boyfriend smacked my I IV with elbow around 5 am. I woke up screaming convinced he had pulled it out. Needless to say there was no sleep after that.
I was pretty fine all morning. Kristin however called to say she had a full body rash, which itched, a fever and a headache. We decided between us that she probably got the high dose where as I must have gotten the low dose.
We got to the doctors at 9. Pretty much the same routine as the day before . Pre-infusion cocktail. Kristin IV came out, but mine did not. She took two sticks.. she also got benadryl for her rash. The steroid drip was yucky again. And we just started the campath. I have an upset tummy but Kristin feels fine. We drip another four hours today, but tomorrow we only have a hour steroid drip and two hours of campath. Then Thursday and Friday just a two hour Campath drip. They said we could have infusion sight reactions up until Monday. We could develop graves disease or ITP at any point during the next year or so and we absolutey can not get pregnant at any point during the study ( two years or so)
I will post more later. I am also keeping a video, picture and written diary.
Wish us luck. we are taking one for the team ya'all!
The MS bobsey twins