Belimumab for Lupus User Reviews (Page 2)

• Rose...
• Taken for 1 to 6 months
• September 6, 2016

Benlysta (belimumab) "I had difficulty tolerating steroids on a daily basis. My doctor suggested Benlysta since other patients had success with it. My first infusion went well with no side effects. My 2nd infusion was administered 2 weeks later, and I had a severe allergic reaction. My blood pressure and heart rate were dangerously high. After 911 was called, I spent 3 days in the hospital recovering. It's now 6 months later, and this allergic reaction has magnified my asthma greatly. I get short of breath very easily and will remain under the care of an allergist. I knew an allergic reaction was a possibility. I'm now back on steroids."

• smc
• Taken for less than 1 month
• October 29, 2018

Benlysta (belimumab) "I am 69 years old and was diagnosed with SLE 2 1/2 years ago. Prior to lupus, I had Primary Sjögren’s Syndrome for years and took Plaquenil for 18 months and stopped it for retinal issues. After stopping Plaquenil, I was prescribed weekly oral methotrexate, which after 4 years gave me debilitating diarrhea and we stopped it. I had my first infusion of Benlysta one week ago, and I felt better than I have in years. My premedications were oral Tylenol and IV Benadryl and Solucortef. The only side effects I noticed were waking up with a headache the first night and some mild dizziness that I still have occasionally. Most nights I don’t have pain, but when I do, the opioid covers it. I have been taking prednisone 15 mg daily since the March flare and am hoping to be able to taper it off. The prednisone has caused a 15-pound weight gain, and I have 3+ pitting edema in my thighs. Overall, I would definitely recommend Benlysta to another person with SLE."

• Fla...
• November 16, 2017

Benlysta (belimumab) "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 reduce my Vicodin for breakthrough. This month is my first on the new Sub Q injection, and I’m dying. First, it took a while to get approved via insurance. I started these “behind” in pain, and after 3 weeks, I’m no better. I plan on discussing with my Dr. in the next week or two. So my rating is for the infusion, NOT the weekly injection."

• Deb...
• Taken for 1 to 6 months
• February 27, 2020

Benlysta (belimumab) "The Benlysta subq injections are so painful to me that every time I auto-inject, I’m not able to hold the needle in place and take it out before my countdown is supposed to end. Therefore, I would say I am not receiving 2/3 of the injection. No, I don’t want to get monthly infusions at this time. I hope in the future alternatives are available or the prefilled injectors are made to deliver a less painful experience."

• Shellc
• February 9, 2018

Benlysta (belimumab) "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 month's 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."

• Snapd...
• Taken for 6 months to 1 year
• February 2, 2018

Benlysta (belimumab) "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 level. Cons: 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."

• KayeE...
• Taken for 2 to 5 years
• May 9, 2021

Benlysta (belimumab) "I have SLE and Benlysta has been a lifesaver for me. I have been doing the weekly injections for almost three years and I have not had a single flare since I've been on it. It has also put my Hypocomplementemic Urticaria Vasculitis in remission and has kept it in remission."

• Lupie
• October 27, 2016

Benlysta (belimumab) "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 Hashimoto's. 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 an 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."

• OmaLa...
• Taken for 1 to 2 years
• April 29, 2014

Benlysta (belimumab) "Worked very well, controlled symptoms and put me in remission. Felt like I did 20 years ago - pre-SLE and Siscoid Lupus diagnosis! I had a serious anaphylaxis reaction after my 3rd infusion from not being premedicated by my previous rheumatologist. Changed physicians and continued treatment with pre-medication of Benadryl and Solumedrol in IV. It worked for 5 treatments and then I had a reaction a 2nd time and was removed from the infusions. Doctors say had I been premedicated from the very beginning, I more than likely would not have had a reaction. My remission is now over and I am worse than prior to Benlysta treatment. Benlysta co-pay program paid for 100% of my deductible, as well as $7,000 in co-pays each year."

• Quenn...
• Taken for 1 to 6 months
• August 8, 2013

Benlysta (belimumab) "I have been using Benlysta since April, and it is doing wonders for me. Some mornings I tried but couldn't get out of bed, but not anymore. I sleep well and have energy. My only problem is the weight gain. I started with every two weeks for 2 months and then once a month. When I just started the medication, I used to feel a funny feeling in my mouth, not anymore."

• MzTCo...
• Taken for 6 months to 1 year
• September 11, 2015

Benlysta (belimumab) "I wanted to wait some time before I weighed in on my Benlysta infusion experience. Just had my 8th infusion; what I've noticed is less cutaneous/skin involvement. I still have joint pain, although not as severe. My autonomic nerves have also been affected by lupus; I see no relief there; still lose consciousness because of random sudden blood pressure dips. I know Benlysta is working because I'd hate to see what shape I'd be in without it, especially with having three types of lupus (SLE, tumid, and discoid lupus)."

• SUM
• April 19, 2018

Benlysta (belimumab) "I was diagnosed with SLE, RA and sjogrens syndrome a little under 2 years ago. I am currently 40 years old. I have tried numerous oral medications as well as injections. Most I have had allergic reactions too. Had a few trips to the hospital for dehydration along with an unexplained irregular heart rate. This is now being treated with Metoprolol. One medication caused pancreatitis. I started Benlysta 6 months ago. With my first treatment I was extremely tired and the next day my mind was forgetful and foggy. I am pre-medicated with Tylenol and Benadryl with each infusion. I have noticed a big difference in my joint pain and fatigue. I would not say that it is completely gone however there is a vast difference. I still take a low dose of prednisone and plaquenil. I would like not to have infusions for the rest of my life as I would need a port because my veins will be blown out in the next few years from monthly infusions."

• Mac
• Taken for less than 1 month
• June 28, 2017

Benlysta (belimumab) "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."

• Lynn
• Taken for 10 years or more
• July 18, 2023

Benlysta (belimumab) "I have been on Benlysta for 12 years; I started infusions when it was first approved back in 2011. This medication has improved my quality of life and together with other medications like Plaquenil, Imuran, and prednisone, I have not been inpatient in the hospital for several years (I used to be inpatient on a regular basis). My pregnancy with my daughter triggered severe problems with my kidneys, but Benlysta really helped to resolve those. The infusions can be difficult—I get very tired, nauseous, and have accompanying headaches sometimes. But the benefits outweigh the side effects for me."

• rnapier
• Taken for 5 to 10 years
• April 14, 2021

Benlysta (belimumab) "I had been on Benlysta Infusions for years, then switched to the weekly injections. I do feel a little better but not much. I suffer from depression/ADHD and for the past 2 years my depression medication isn't working. I had sepsis last year and had to have surgery. Unfortunately, I still feel bad physically and mentally. I don't know what to do at this point."

• Beth
• Taken for 2 to 5 years
• November 25, 2020

Benlysta (belimumab) "Benlysta completely changed my life. Almost immediately after my first infusion I suddenly had energy again and could actually attend social gatherings without feeling sick for days after. I’ve been on it for more than two years now and the effects have remained. I still have some lupus issues related to brain fog and joint pain but all in all I feel so much better since starting Benlysta"

• Groun...
• December 19, 2020

Benlysta (belimumab) "Monthly IV Benlysta for decreased symptoms fairly well for 2-3 years. Gradually, it wore off as I got closer to my next infusion. After 5 1/2 years, I switched to weekly SQ injection. Both IV & SQ caused foggy head, headaches, GI upset for a couple of days. SQ auto inject is difficult & painful to administer. It is absurd that they would make a drug so hard to grip and hold when the people using it have joint problems. I stopped using it after 2 months. I gradually realized 10 months after discontinuing Benlysta that a huge depression was lifted. I am prone to depression so I thought it had been just me, but now that I’m off Benlysta I feel so much better mentally, even though my pain is worse without treatment. Overall, I think Benlysta IV is a better than SQ and it does help, at least for the first 2-3 years, but to be used with caution in people with a history of depression."

• Hope
• May 13, 2021

Benlysta (belimumab) "I have SLE and SS. My main issues are extreme fatigue and brain fog. I have given myself 3 injections so far; one in stomach and one in each leg. It hurts, no lie. But the pain only last about 20-30 seconds (seems like forever!) It hurts less in the stomach, but harder to do if you have belly fat like me! So far, my issues are in the mental side. A couple of days I felt paranoia, not normal for me. I’ve cried easily on some days, happy or sad. One day I felt super negative, like nothing was gonna ever work. Weird stuff like that. I’m aware of it, so it is like watching myself from the outside. Anyways, I’m still fatigued with brain fog but I’m staying hopeful that this will work for me over time. Also, I was already forgetful but I seem a little more than usual. My insurance covers part of the cost and I am on a program that covers my co-pay for one year. I hope it helps you and me too!"

• Lcp
• Taken for 2 to 5 years
• May 29, 2023

Benlysta (belimumab) "I got benlysta via infusions approximately 8 years ago and loved it. RA became aggressor and SLE was recently deactivated. Granted, I was not of adult age getting infusions and now have my own life and child so opted for injections this time. This literally feels like POISON going in. I’ve had over 10 years of being pricked and injected but thought it was due to my body’s underlying symptoms exaggerating it. Just did injection 5 and I hate it. Hoping it’ll help again and not emphasize depression. I would recommend because I remember this being one of my favorite things to get when doing infusions because I’d take a nap and wake up brand new. Pending opinion now."

• Apple...
• March 19, 2021

Benlysta (belimumab) "I was taking benlysta for three year. I started with the infusion for about a year. Then was put on the injection once a week. It does burn a lot the first 6 treatment but the it ease up a lot. But about 7 months in taking the injectable benlysta my legs started to feel very weak and heavy. I told my rheumatologist . Told me stop it for a few weeks. But I started back on benlysta . I change my rheumatologist I stop taking the drug. But the leg weakness never left. My legs hurt all time ."

• Kc4
• Taken for 2 to 5 years
• February 25, 2024

Benlysta (belimumab) "Total game changer for me. Went from crippled in pain barely able to walk to weight lifting, walking 4 miles a day, and working full time. Benlysta gave me my life back. I could be the poster child for the benefits of Benlysta."

• Ivette...
• Taken for 2 to 5 years
• February 22, 2022

Benlysta (belimumab) "Benlysta is the only medication that helps with my level 3 lupus, it gives me relief of swelling, pain and overall fatigue. While the first day I am sluggish the next day I feel like an energizer bunny, the only down fall is that it doesn’t last for an entire month and I can only have this medication every 4 weeks. Overall I am very pleased with this drug and grateful for it"

• cindy
• Taken for 1 to 6 months
• December 8, 2023

Benlysta (belimumab) "I have been getting infusions of Benlysta for about 6 months. I haven't seen any difference in my lupus symptoms, except less severe rashes on my arms. I just contacted my Rheum. because I haven't started any other new drugs, but I have been having weird dreams consistently & exhaustion from lack of good night's sleep. He recommended I skip the next infusion for now."

• Stacie
• Taken for 1 to 6 months
• October 20, 2023

Benlysta (belimumab) "I'm in week 5 and I can tell a huge difference in my energy levels! I do have a sinus infection, but this could be due to the weather as it changes from summer to autumn. I'll be watching to see if they become frequent. Otherwise, I have hope that this will continue to help and get even better over time."

• ABerg
• Taken for 6 months to 1 year
• November 11, 2021

Benlysta (belimumab) "Benlysta has completely changed my life. It’s been almost a year of treatments and my quality of life is so much better than before. Initially I was really scared to start the infusions, and I was very nervous about side effects. I still get fatigue, headache and a bit of nausea for 2 days after my infusions now but it’s so worth it in exchange for everything I’m able to do with ease now"