Benlysta

Hi everyone, my journey began in 2009. I wasn’t formally diagnosed with Lupus SLE until 2014. I was in denial for a long time. I took hydroxychloroquine for several years and went off of it because I started having high eye pressure. Even though my doctor doesn’t seem to think that’s what caused the high eye pressure, I’m scared to take it now. I have to take two different eye drops to manage the eye pressure. My rheumatologist recently prescribed Benlysta. After the first injection (sub-cutaneous) I had some itchy spots and hives on my hands that lasted several hours. Then after the second, I had more itching and hives on my ribcage area where my bra sits. Finally, I took my third injection and the hives and itching are worse on my ribcage and abdomen and on my back. I’ve been taking Claritin during the day and Benadryl at night. Talked to my doctor and she initially wanted to stop it, but I feel like my lupus symptoms have already started to subside. She said if I take it again, I need to take a cocktail of Benadryl, prednisone and Pepsid the day before, the day of and the day after each injection. I have called Benlysta and can’t seem to find any information on the incidence of hives and itching that isn’t at the injection site when taking the drug. Sorry for this really long post but I’m hoping if someone else has experienced these symptoms, did the itching and hives eventually subside? I’m afraid of taking Benadryl and steroids long term because both drugs increase intraocular eye pressure and I’m already having trouble keeping that under control. Not to mention, I also have secondary Sjögren’s and suffer with dry eyes and dry mouth and the Benadryl exacerbates the dryness. I’m trying to find some hope here that the symptoms will subside and I’ll be able to continue the Benlysta.
Thank you,
Itching in Florida