FDA Approved Drugs and User Comments: BENLYSTA

User Comments:

For Systemic Lupus Erythematosus “I started benlysta 4 months ago for my SLE. I have been on plaquenil and prednisone for 10 years and for the first time ever, I was able to taper off prednisone as of yesterday. The infusions have changed my life. I am not in constant pain. I am so so very thankful to feel almost normal most days….However, this last months infusion, I am still having joint pain… I read that someone else had this experience… where they worked every month except for one. It makes me wonder if there is room for error in administering the drug. I do see that the nurse mixes the drug and must wait for it to be fully dissolved. I feel so different this month than the previous 3… almost like the drug wasn’t infused at all.”

Shellc3 February 9, 2018

For Systemic Lupus Erythematosus “I have tried every medication for Lupus and have had no luck until Benlysta. I have been doing the infusions for 7 months and am so very grateful. Pros: improved joint pain, muscle aches, skin rash, and energy levelCons: only one month it did not work, and all other months it has worked for three weeks and my symptoms come back the fourth week, but I am still grateful for having it.”

Snapdrag0n (taken for 6 months to 1 year) February 2, 2018

For Systemic Lupus Erythematosus “I was on benlysta IV infusions for 9 months and felt very good after my initial three infusions which were every two weeks. I got a very bad headache for the first 24 hours after infusions but after that my joint pain and fatigue improved immensely. Two months ago the infusion nurse was not able to start my IV & recommended that I go on benlysta subcutaneously. I was told by my insurance company, which is Medicare, that because they could not get an IV in me this would be fully covered. Much to my Devastation and shock I found out that this was not covered and the cost is $1,158 per month. This is outrageous and more than what my SSDI payment is per month! In addition, cost aside, the injection is extremely painful. It’s almost impossible to give the full amount because of how painful it is. My thigh burns all day after giving my self the autoinjection and is bruised and feels like I’ve been punched for about 5 days later. I don’t feel the same relief that I felt with IV.”

Deena Marie (taken for 6 months to 1 year) January 29, 2018

For Systemic Lupus Erythematosus “I’ve been on the Benlysta infusion for almost 2 years with great success. During this time I’ve been able to stop taking prednisone and reduced my Vicodin for breakthrough. This month is my first on the new Sub Q injection and I’m dying. First it took awhile to get approved via insurance. I️ started these “behind” in pain and after 3 weeks I’m no better. I️ plan on discussing with my Dr in the next week or two. So my rating is for the infusion NOT the weekly injection.”

Fla Lisa November 16, 2017

For Systemic Lupus Erythematosus “Dx with SLE at age 40, after years of searching for a reason why I was feeling so awful. Treated with plaquenil and Arava for years, with positive results. But, recently started to have hearing issues and less relief then in the past with joint pain and stiffness. So, my rheumatologist offered me Benlysta as an option….had first infusion on 6-22-17. Felt tired after infusion, went right home had dinner and went to bed for around 8pm. Woke up in the middle of the night with an awful migraine ( which last 3 days)….also felt just “run down “. Having 2nd in fusion in another week…hoping for no headache this time.”

Mac287 (taken for less than 1 month) June 28, 2017

For Systemic Lupus Erythematosus “I have SLE and have been on Benlysta for 1-1/2 years now. I could barely walk or function prior to my diagnosis, SLE Lupus, RA and Hoshimotos. I felt better during the first 3 months of infusions than I do now. I had one really bad 3-month flare this year but my rheumatologist kept on top of it. I felt the drug go through my entire body for the first 8 infusions. No kidding. Lightheaded, metallic taste in my mouth and a little woozy. I always drove myself to and from infusions and went directly home to rest afterwards, as it made me very groggy within a hour. If you are sensitive to drugs, have someone drive you. I experienced diarrhea a few hours after infusions for the first year. You must take an antihistamine before being infused.”

Lupie13 October 27, 2016

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