I have been on Tysabri for quite some time now. I just recently had my 33rd infusion. I began in May of 2007 and it has been the best decision of my life. I understand the risks that are involved, but, then again, there are risks involved with any treatment.
I cannot answer for you whether you should continue or not, this is a personal decision that only you can make. I can only tell you that I have had MS for 20 years. If you saw me walking down the street, you would not know that I had it. I am ambulatory and quite active. I started my therapies in 2004 when Betaseron came out, followed by Avonex, followed by Copaxone, Rebif, and then Copaxone with monthly IV steroids until I finally was able to start Tysabri. My fatigue was at an all time high during that period and I was worried that I would slowly begin the descent. My father also had MS and died of complications in 2002. He did not have the luxury when he was diagnosed in 1981 of any therapy. As a consequence, he became a quadriplegic.
When I made my decision to pursue Tysabri, I sat down with my doctor and discussed my reality. My MRIs did not look great and there were numerous black holes. The risk of developing PML was low, yet the risk of having my MS progress was very high. I placed my bet on Tysabri, since I had tried all of the therapies available prior to Tysabri and their efficacy was short lived. Furthermore, the side effects of some was interfering with my quality of life, i.e. rebif is not well tolerated by petite women because of the high dose interferon).
As I now approach my 34th dose of Tysabri on December 18, I can tell you that my neuro and I are acutely aware that we are now in unchartered territory. The data is showing that of the 27 cases of PML, 1/3 occurred in patients with less than 24 doses, the other 2/3s occurred in patients with more than 24 doses. Should I switch? I am at a crossroads at this time, but I have never felt better. My MRIs have been stable with NO ADVANCEMENT, since August 2007. No relapse. No side effects from Tysabri since I premedicate and have them run the infusion for 1.5 hours to reduce any potential for fatigue or headache (as recommended by Dr. Carlo Tornetori Director of MS Clinic, George Washington University).
The new data shows that if you stop Tysabri, a relapse/attack is likely to occur within 3 to 6 months. Something to keep in mind. So, I view Tysabri right now as a proven way for me to keep my MS at bay. In the meantime, I have already started my research in the event I need to find another option.
I hope this in some way, helps you. More than anything, I want you to know that there is someone out there who has had 33 infusions and, so far, so good and not regretting a single moment.