Belimumab for Lupus User Reviews (Page 3)
Brand names: Benlysta
Belimumab has an average rating of 7.9 out of 10 from a total of 58 reviews for the treatment of Lupus. 69% of reviewers reported a positive experience, while 7% reported a negative experience.
Reviews for Belimumab
- Shell
- Taken for 1 to 6 months
- December 4, 2023
"It eventually gives me increased daytime energy for which I am grateful, but simultaneously causes insomnia that I haven't been able to defeat despite trying many sleep aids. It is also giving me unusual nightmares and I'm definitely gaining weight despite eating less than usual. I believe I've ruled out other factors that could be contributing to the weight increase, and should point out that I'm in that 50-59 age bracket that showed weight gain in a clinical trial. Having gone off for 2 weeks and restarting, I'm confident that it is also the reason for an increase in my autoinflammatory disease. Most concerning is I'm crying sporadically and it's difficult to control. This went away during my break from Benlysta. Unfortunately, the side effects are outweighing the benefits so far."
- Doc...
- Taken for 2 to 5 years
- July 3, 2024
Benlysta (belimumab) "I've had SLE for 33 years. After I reached my mid-60s, the flares became worse and I was barely getting out of bed to use my bedside commode. I began seeing a new rheumatologist. He tried methotrexate, plaquenil, Ivig infusions, about everything. He put me on Actemra and I had an allergic reaction. Then he put me on Benlysta. I thought, 'Here we go again!' But it worked! I've been taking the subcutaneous injections for a little over 2 years. My life has done a 180. I'm up, active, happy, and have as much energy as a 70-year-old, wheelchair-bound woman can have. The injections sting a little, but I inject the medication very slowly with pauses in between pushing the plunger. It seems to help a lot. And it's a SMALL discomfort compared to the pain, fever, and profound fatigue that I would have without it."
Frequently asked questions
- Butte...
- Taken for less than 1 month
- August 29, 2021
"I have SLE lupus and sjogren's syndrome and OA. Diagnosed in 2020, 15 years of living in pain no one seem to know what it was. Was told from depression/stress to just old age. I’m 49! I took hydroxycloroquine, Mexthotrexate, and felt like a guinea pig, neither of them worked made me WORSE! So my new RA dr said let’s try Autoinjector Benylsta. I took last night in belly, and I feel like I’m 30 again. I feel fabulous. one injection!!! I had a little spine back pain last night after injection and it did make me groggy, took at that night for that reason. I only drink water so I was already hydrated. But today, no inflammation, no muscle spasm, little to no joint pain and energy which I haven’t had in 15 years. They say day 2 and 3 are worse or later on injections, but taking it day by day! First time autoinjector this is what I did with little pain. Ice area 5 min or more till numb, wash hands, clean area, do not pull skin TAUT or pinch, inject, after injection place ice pack. BOOM!"
- DaniBev
- June 8, 2015
Benlysta (belimumab) "Infusion #2, and my joint pain and swelling went down almost immediately. I think I have finally, FINALLY found the answer for me!"
Are you taking this medicine?
- PaGaPo
- June 29, 2014
Benlysta (belimumab) "I have had incredible results, but at week three I came down hard, the good effect did not last the entire four weeks."
- Gr8to...
- Taken for 1 to 2 years
- October 26, 2013
Benlysta (belimumab) "This medication has been a lifesaver for me. Even though I do have some very minor side effects, I wouldn't dare think of changing it!"
- Dmano
- Taken for less than 1 month
- April 9, 2018
Benlysta (belimumab) "Exhaustion, bone pain , spine pain, ocular migraines, vertigo, potassium depletion, chest pain, heart problems, bone damage, memory problems, nastagmus, can't sleep due to pain, fevers, GI problems."
- iltd
- Taken for 2 to 5 years
- April 25, 2023
Benlysta (belimumab) "Benlysta has been a life saver for me. It did take some time for the medication to start working but after a year of being on it, I felt better than I had in years."
- Smile...
- Taken for 1 to 2 years
- May 17, 2018
Benlysta (belimumab) "I’ve been back on Benlysta for past 2 years this go around. Lately I don’t feel the treatment is working anymore. I experienced increased shortness of breath , leg pain and headaches."
- Nadia
- Taken for 1 to 2 years
- March 16, 2024
Benlysta (belimumab) "I love it. Benlysta has changed my life for the better."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
More about belimumab
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- Drug class: selective immunosuppressants
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Patient resources
- Belimumab drug information
- Belimumab (Advanced Reading)
- Belimumab Auto-Injectors and Prefilled Syringes
Benlysta (belimumab) "Since taking this medication, I have not had any flare-ups nor rashes. My fingertips are no longer subject to pain from cold water (I am now able to wash veggies in cold water without pain). Hair loss has been minimized. Chest no longer hurts with deep breaths. Episodes of fatigue issues are almost nonexistent. With the exception of the weekly injection (and additional medication), I am now able to live a mostly normal life."