Benlysta and Joint Pain: What Users Say

• Lin...
• Taken for 5 to 10 years
• March 8, 2020

For Lupus "I found out that if you inject Benlysta in the stomach is less painful. If you take the medication out of the refrigerator for 4 hours (the med can be as much as 12 hours out after that it has to be disposed) before injection time, it will be less painful when the liquid enters your system. Put the medication away from light, hot, or cold and then inject. If you are injecting yourself, do it very slowly with the prefilled one but not the auto-inject. The auto-inject will release the med very fast and it's very painful. I've been using it for 5 years now. Still have a lot of joint pain, but the fatigue, the brain fog, and the other symptoms are much better. I hope this info can help and bless someone."

• Dee...
• Taken for 6 months to 1 year
• January 29, 2018

For Lupus "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 and 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 myself 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."

• Dox...
• Taken for 5 to 10 years
• August 22, 2018

For Lupus "I have been on Benlysta for almost 7 years. It has been a great drug for me. It helped tremendously with my joint pain and fatigue, although I still feel tired, might be my age of 68. I have heart involvement with my lupus, and the drug has kept down the inflammation in my coronary arteries."

• Roc...
• Taken for 1 to 6 months
• March 9, 2022

For Lupus "I have been on Benlysta for only 6 weeks now, but can already notice a difference in my fatigue and joint pain! I have so much more energy and am no longer dying for a nap each afternoon or sleeping more than 8-9 hours a night. I can exercise again without my knees swelling or the joints in my feet aching for days afterward. I want to say that other people's reviews about the shot being painful scared me before I started, but I don't think it hurts at all! I leave it out for an hour and autoinject it into my stomach. Just a brief pinch! I was able to get the Benlysta copay grant program to cover up to $15,000 in deductible fees per year, which made it possible for me to go on this medication. I am not low income, but middle class with rubbish insurance. I would not have been able to justify/pay my $9,000 deductible with accruing debt. The program approved me within an hour of filling out a 15-minute online application. So, to anyone who thinks they can't afford it, look into that program!"

• Dia...
• May 3, 2016

For Lupus "I have been on Benlysta for seven months now, and it's really helping with the fatigue. I finally feel like I can get up and do something on my days off of work. I'm in the medical field and really don't want to end my career yet. As far as the joint and muscle pain, it's still there, unfortunately. Maybe it will get better soon."

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

For Lupus "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."

• She...
• February 9, 2018

For Lupus "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."

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

For Lupus "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)."

• Bet...
• Taken for 2 to 5 years
• November 25, 2020

For Lupus "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."