Today I was told I am JC positive and need to find a different treatment due to the risk of PML involved with my current one. The JC virus is the John Cunningham virus and much of the population carries it, some estimates are 70-90% of the people in the world. To the average person, it is insignificant. To a person on Tysabri, it can cause life threatening complications. PML, which stands for progressive multifocal leukoencephalopathy, is that complication.
This news was understandably upsetting as I have been exacerbation free for the 3 years I have been on Tysabri and I have enjoyed how little the infusions affect my daily life. Having already tried many ineffective treatments, my other options are limited. There are options though, so I am glad for that and I know what my next move will be. The peace that I feel about this decision can only come from God.
I am incredibly blessed. First of all, I am thankful for my incredible friends who helped me deal with finding out this news. The prayers were felt and the texts were appreciated. I am also so glad to have my MS friends. Some, who are just starting on the path I am wrapping up, distracted me from my situation today with their questions. Others who have moved on to the next step offered me great firsthand information and advice for what it will look like going forward. Finally, I am really grateful for my amazing and supportive husband! I am especially glad that he is a fighter and ready to do whatever is necessary. I love that he is my partner in life!