I haven't really been on here for a while. Mostly because for the past two years my symptoms had quieted down and I was busy living an active life. I've been in the campath study for three years now. As I'd hoped for, I responded pretty well to the first two doses; (well not to the actual infusions they almost killed me) but once my body healed I felt like I might be in remission.
After my second dose two years ago, I started to I feel almost normal for the first time since my diagnoses 5 1/2 years ago. Most of my symptoms are cognitive and visual but I do have a lot of numbness in my extremities, bad fatigue, urinary problems and balance issues. On my three year anniversary of my first dosage, everything looked good and we decided to stop at two doses ( per the study protocol) and wait and see, the third dose would only be used as needed if I had a documented flare up.
However about a month ago I suffered a bad flare up. All of my symptoms hit me at once ,like a brick, and I could barely get out of bed. The flare up lasted a really long time and most of my symptoms are still lingering. My test scored confirmed my flare up and I was offered another ( which will be the 3rd) dose of campath.
I am having a really hard time deciding if I want to re-dose for a third time. On one hand, this would be a good time to re-dose. I have no job right now, no obligations, and time to let my body heal. Also, I would get to re-dose with my friend who is also in the study. We were friends almost nine years before we both were diagnosed with MS ( 6 months apart). We both got into the campath study at the same time, and we were both dosed together for the first two doses.
Also, I really don't have any other treatment options as I responded REALLY badly to the CRAB drugs. I know there is diet changes and some other options, but nothing I feel all that jazzed about. My lingering symptoms lead me to believe that my disease is progressing again and I feel like a victim at the idea of doing nothing.
And finally I don't have any health insurance right now. My insurance doesn't kick in until August and even then, it is horrible insurance that may not cover Campath once it is released to market. So this may be my last chance to get Campath for free and in a safe environment, where they monitor me monthy for any nasty side effects.
Now come the cons against doing it. As I said, my body re-acts horribly to the infusions. Along with all the plethora of other horrible side effects, during the infusion, my heart rate drops really low and I have to be monitored to make sure I don't go into cardiac arrest.
I really feel like Campath is poisoning my body and that every time I dose, I am playing russian roulette. I feel like it makes me more prone to cancer. I wonder how easy it is to get a secondary infection. And now within the last week, TWO people in the study have come down with either ITP or Goodpasture syndrome. Both were hospitalized (did I mention I don't have insurance). I can't afford another health issue in my life ( I mean which of us can?).
And finally, my boyfriend and I were planning on starting to try for a baby in October. By that point , I will be 34 years old. I don't have many fertile years left. Getting Campath now means delaying that at least a year. And even then I wonder about it's effects on the baby development.
I just have a bad feeling about getting re-dosed a third time. But I also have a bad feeling about not getting re-dosed. I mean, it really seemed to help me. But who knows if that was really campath or the natural progression of the disease.
I guess I am curious to if anyone has or knows anyone who has dosed a third time?
And what would you do in my position.
As of now I am thinking of delaying the infusion ( I have another 7 months were I can re-dose) and seeing what the next couple of months bring. However, in three months, I won't have the luxury of not having to work, or re-dosing with one of my best friends. Plus that delays babies even longer.
sigh.. I am so confused..
Thanks for reading, any and all comments are appreciated.