I'm 24 years old, and have had Lupus (SLE) since I was 10. I have been on different medications in my 14 year battle with this disease, and have tolerated all of them fairly well, but we are looking for something that will help with my symptoms more than my numbers. My biggest complaint is pain on the left side of my chest while breathing, trouble breathing, and frequently feeling tired. I have just started the new infusion medication Benlysta. The first three infusions are to be administered 2 weeks apart. I tolerated the first one very well. I had my second infusion two weeks ago, and began to have tightness in my chest and trouble breathing. My doctors stopped the infusion right away, and I am headed back tomorrow to discuss the option of trying the infusion again. I was told that generally when there is a reaction to a medication there is itching (hives) and difficulty breathing involved.
Is there anyone who is currently on this medication or has tried this medication and has any advice? Had the same reaction to the meds as myself? I'm really hoping this was a one time reaction, and tomorrows infusion will go off without a hitch. I really would like this medication to work. I have heard that it works well for those who can tolerate it.
Thanks for your time!