MY EXPERIENCE WITH BENLYSTA

After my first infusion of Benylsta I had flu like symptoms for about 3 days. Two weeks later I had my second. That time I had flu like symptoms for 4 or 5 days. By the time my fifth infusion came around I had to report to the infusion center that I was unable to do the infusion because I never recovered from the last infusion. I was bed ridden, extreme fatigued, could not eat, extreme depression, muscle weakness, Parkinson’s  like tremors, confusion, vertigo,  extreme pain and unable to control total body pain, dry eyes and lesions around my eyes, extreme and uncontrollable joint pain all over body.

In my opinion the Benlysta made me worse than before I started. I read that in the UK the medical community refused to use Benlysta because they felt there wasn’t enough data proving its long term good or bad effects and that costs were prohibitive. If I am permanently impaired and disabled even more than what I am now, then the pharmaceutical company has a huge problem. I feel that some one some where was pushed into approving this drug for Lupus patients because there has been no approved drug for SLE for the last 50 years. Therefore awareness, a cure and pharmaceuticals for Lupus needs to increase.

Im sorry my experience is bad but it needs to be said for someone who may NOT benefit from this drug and in fact get worse if they take it