It’s not really known how many people are actually affected by Primary Amyloidosis (AL), but it’s thought that approximately 1,500 to 2,500 people develop it each year in the United States. Of those people the majority are men in their 60’s, so you can imagine my doctors’ surprise when my heart biopsy came pack positive for Amyloid in October of 2014 when I was only 42 years old…and female.
Because it’s rare there isn’t a lot of research being done and right now the most effective treatment for the disease is actually a treatment for Multiple Myeloma. Four rounds of chemo therapy, then a stem cell harvest, followed by another round of high dose chemo and finishing things off with a stem cell transplant. Ironically one of the side effects of this treatment for AL patients is that they could actually acquire Multiple Myeloma in addition to their AL…go figure.
Thankfully that didn’t happen to me. Although my AL is in remission and has been for eight and a half month, no matter how long the remission lasts it’s never considered cured. From what all the experts have told me, it will come back eventually. That is of course if the damage the AL did to my heart doesn’t kill me first.
The rub with AL are the long-term side effects that linger on well past your treatment ending. The minor and some not so minor damage that is done while the AL is ravaging your body before it’s treated. Not to mention the long-term side effects of the treatment itself. I’d like to say I’m better since my treatment for AL but the reality is my long-term side effects linger and in some cases are worse than the AL itself.
It’s frustrating having a disease that’s hard for people to understand. Something that most have never heard of. It’s hard to be a young-ish female in a sea of older-ish men with this disease. What works for a man doesn’t always work for a woman. I hate that there are medications that can prolong the life of AL patients but I can’t take them because they cause such severe side effects. I think it’s crazy that some of the most common drugs used to control heart rate and rhythm simply don’t work for me.