I will begin by apologizing for the long post.
I would like the wonderful people from this site to comment on my situation since it might make me think about things that I might have overlooked. Don't worry, I make my own decisions and think for myself. I'm simply looking to see if perhaps there is something I have not considered.
My doctor is overly optimistic about Tysabri (he makes comment like "you could stay on Tysabri for your entire life (I am still young) and as long as you take medication holidays, the risks of PML will be 1 in 1000"). Of course I tell him that he is not in a position to say something like that. That taking a drug holiday has not been proven in a clinical trial to reduce the risks of PML, that we do not know how long a medication holiday should be in order to lower the risks of PML etc ... I could go on and on about the things he says but let's just say he's irrationally positive about the drug.
Here's my situation
RRMS for 12 years. My MRI has always been VERY active (lots of lesions in my brain AND spinal cord). Clinically, I look a lot better than my MRI would suggest (I do not have any visible symptoms) even if I have been feeling awful for 12 years with a record breaking level of fatigue (that is getting worse every year) and I've pretty much been unable to live my life.
After trying Rebif, being on Copaxone for 5 years and then in a clinical trial, I tried Tysabri (I would have tried it before but I had no insurance to pay for it so I had to wait a little)
I had my first infusion last December. In total, I had 7 infusions. I had a relapse 2 weeks after my first infusion and then another relapse 3.5 months later. I also had more cramps and fatigue in my legs over the past 3 months. On average, without medication, I have one relapse per year. Hence, in the 7 months I was on Tysabri, I have been doing worse than I usually do. I also have a small increase in my EDSS.
I had an MRI (without gadolinium) last March. The MRI showed new lesions on the brain and spinal cord. My MRI was compared to my previous MRI. However, in the time before I had my most recent MRI, I was 4 months without any medications and then 3 months on Tysabri. However, with the activity I describe above, it's safe to say that progression is continuing while on the drug.
I had my last infusion 2.5 months ago. I had an appointment with my neuro today but I didn't get to really debate the risks vs benefits of staying on the drug. My doctor just wants me to stay on the drug - period.
I am not impressed with the effectiveness of the medication for me and so far, the risks associated with this drug seems to be greater than the benefits.
But, my disease is progressing so rapidly than I am wondering if I really should stay on it a bit longer and keep evaluating what happens
Oh...and for those wondering....yes, I am interested in CCSVI. I will be going to Albany, NY this winter.
Now, back to Tysabri. Is my rapid disease progression sufficient reason to decide to go back on Tysabri for a few more months (even if so far, I don't feel like it is particularly effective)? Yes, I am a little desperate