Belimumab and Brain Fog: 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."

• Joj...
• Taken for less than 1 month
• February 12, 2020

For Lupus "I have severe SLE, having been diagnosed over 15 years ago. I’m currently on plaquenil, steroids, and CellCept. I have lived with severe pain in my joints and my spine. I just did my second injection (I inject once per week). Right now, I cannot get out of my own way. I have no energy and no drive to do anything. Having to inject once per week, am I going to feel like this forever or are these symptoms of exhaustion going to get better? I can deal with the headaches and such, but this brain fog and lack of energy is really bothersome."

• Hop...
• May 13, 2021

For Lupus "I have SLE and SS. My main issues are extreme fatigue and brain fog. I have given myself 3 injections so far: one in the stomach and one in each leg. It hurts, no lie. But the pain only lasts about 20-30 seconds (seems like forever!). It hurts less in the stomach, but it's harder to do if you have belly fat like me! So far, my issues are on 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 going to ever work. Weird stuff like that. I’m aware of it, so it is like watching myself from the outside. Anyway, 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!"

• 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."

• SUM...
• April 19, 2018

For Lupus "I was diagnosed with SLE, RA, and Sjögren's 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 to. 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."

• Gro...
• December 19, 2020

For Lupus "Monthly IV Benlysta 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 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."