User Reviews for Benlysta intravenous

My lupus was barely manageable before starting this drug. It has been over a year now and I have more energy and less flares. Down side is a week before my scheduled treatment, I start to feel a flare coming on. I also went 2 months without getting a treatment and ended up in the hospital due to flaring so badly. Over all I would recommend this to any patient suffering from SLE Lupus.

I have been on Benlysta for about 8 months and was diagnosed with SLE in 2010. For the last 6 mos., I generally have 1-2 bad days, with fever, nausea, either insomnia or extremely tired, and feeling weak; however, by the 3rd day, my energy level is back to the normal. However, around month 4, I noticed that about a week before my next infusion, Pain increases, joints hurt, like my body knows it is time for the next infusion. SO far my labs show it is working..Sed Rate back in the 20s, when it has been in the 60s for four years and other lab markers is showing improvement..but having more problems with my veins collapsing. Only taking Imuran and Plaquenil. Not sure if it is related but noticed Fibromyalgia symptoms have worsened right before a treatment and immediately after. Overall satisfied with Benlysta as it has greatly reduced the inflammation in my body. Thank you everyone for the reviews as I found a few on here that were exactly how I was feeling. Read More Read Less

I was one of the first patients in the United States to take Benlysta in June 2011. I had to slow the infusions down to three hours instead of one and half hours. I experienced nausea and an mild sort of asphasia ( a sort of muddled thinking) and a headache. I was also tired after the infusions. Each time I had an infusion (6 total) my temperature would rise about a degree and I felt discomfort in the abdominal/ bladder region. I did inform my doctors but they did not seem concerned at all. The discomfort only occurred after the Benlysta infusions! eventually it did turn out to be serious and this is why I'm writing this review. Though rare, the drug lowered my immunity and my appendix abscessed and spread throughout my abdomen and I almost died. I am not a drama queen. Anyone with lupus has suffered enough usually to be stoic and if anything quiet about suffering. I did go see several doctors and no one looked deeper into my concerns but in the end the doctors did say they thought it was related to the drug, a very low-grade infection could have been brewing before I took the drug. I do not see a lot of comments with this experience so I do hope they post mine as I would like people to be fair warned to watch very closely what is going on with their body and not dismiss any pain or fever while taking Benlysta. Sadly, I did feel more energy even though I was apparently ill after taking the Benlysta infusions. Read More Read Less

I was diagnosed with SLE and DLE 25 years ago and just started Benlysta May. My flairs have stopped, but I am having other problems since taking it. i have hot flashes that my Rummy says are allergic reaction. I get high fevers, start to sweat profusely, sometimes I have trouble breathing, and I have to lay down. These are the worst the first week to week and a half after my treatment and the week before my next treatment. Other wise I do okay. I have noticed that the discoed the lupus is also getting a lot better I had it all over my body and now the places are flaking off and going away. It is really helping my Lupus, but since I have several more autoimmune illnesses I am not having the same reaction as most of the others. I am usually down for 1-2 weeks after a treatment but then i get to feeling some better unless I am having a flair with one of the others. As far as my lupus it i making such a difference that even with the reactions to it I still don't want to go off of it and i am willing to deal with them rather than have my lupus attacking me.Read More Read Less

For 10 years I weighed a mere 88 pounds. After taking Benlysta I have gained 20 pounds--without any change in my diet. Benlysta doesn't "cure" all my symptoms--I continue to require steroid injections in my joints and taking plaquenil. But I would say that Benlysta did, in fact, change my life for the better. I was diagnosed with SLE 25 years ago and have been treated with plaquenil and other meds during that time. But with Benlysta I have more energy and am less depressed than previously. I can't recommend this treatment enough.Read More Read Less

The facility administering the benlysta was excellent. However, after an yr and a half I found absolutely. I change except for being more susceptible to infection.

I was diagnosed with SLE 20 years ago and have never been in "remission" since. I have had times that were worse than others with a SIGNIFICNT flare every 10 years- on the nose. The mix of Cellcept, methotrexate, steriods, Plaquinil and a variety of other juicy meds have lead me to live a relatively normal life, barring the 10-year flares. This last flare was by far the worst with both pain, indescribable exhaustion and cognitive delay. The fatigue and delay seemed simply debilitating especially considering my line of work and position. With an anti DNA of >200 that would not respond to anything, the Rheumatologist convinced me to give Benlysta a go. 1rst session- felt like I had hit by a FREIGHT train the next day. Day 2, however; I felt like I could take on the world. The week after was a mix of decreased appetite, slight nausea and diarrhea. Nothing worth stopping the drug for. The rest of my loading doses had a similar outcome, less severe each time. Then came my first 4-week cycle. For 3 weeks after my last loading dose I felt on top of the world! My former energy level had returned as had my mental sharpness- I was so pleased. Then EXACTLY the week before my next infusion, I just crashed. Back was the exhaustion, pain, inability to think. I was so ready for my next dose! After that highly anticipated does, the next day was another freight train event. I could barely get out of bed with a headache that rivaled a migraine. But the second day- I was back to ruling the world. And this time- it lasted until 2 days before my next dose. And it’s been like that ever sense. With each treatment the “day after” seems less severe. Clearly it’s building up in the old system. All in all- 3 bad days out of 30? I’LL TAKE IT!! The cost of Benlysta is a draw back, but if you can afford it- it’s life changing and I can’t say enough positive things! GOOD LUCK! Read More Read Less

I have been on Benlysta infusions for 6 years. I was in the phase 3 trial of Benslyta. I would say the only benefit I felt from this drug was I had more enery. It didn't help me with pain at all. I would say starting on my 5th year of infusions, I no longer was seeing any improvement with it. It no longer gave me an energy boost. I have decided to go off Benlysta and see if my lupus gets worse. It has been 2 months so far and I don't feel anyworse without my Benlysta. However I know this drug has changed a lot of lupus patients lives and that is aweome.Read More Read Less

I have been taking Benlysta for 9 months and it has proven to be a great treatment for keeping lupus managed. Finally, after 7 years, I have some relief. The inflammation surrounding my heart and lungs is finally under control. Also, I am down to 5 mg of prednisone every other day and my doctor and I have not talked about lowering the plaquenil yet. I also take calcium d glucarate (500mg) and the combination works very well for me! Of course after my monthly infusion I am extremely tired and sometimes I get severe diarrhea for about a day, but by day three, I am feeling great. On occasion, I get leg cramps and haven't been able to understand what causes those. I did not have them before Benlysta. Overall, I recommend this treatment for people like me with severe SLE...it has worked for me!Read More Read Less

It has made my quality of my life, my families lives as well so much better, I was on oxygen and now I am not. I have had 10 infusions now, I did however have a reaction on the second or the third (can't remember) the IV was hooked up onto my left arm and my bicep muscle on the left arm swelled and tightened right up very tight. So now it takes me almost 4 hours to endure the infusion instead of 1 hours time

I have had 2 infusion treatments of Benlysta. After my first infusion, I ended up developing a skin rash. Initially it was thought to be a drug reaction, though it was later determined that it was a lupus reaction from too much sun. My total treatment time in the office is usually around 2 hours total. I have not had any side affects from the medicine other then feeling very tired for about 24 hours afterwards (Partly due to the benedyrl they give before hand I am sure). After 2 treatments, I have noticed that my energy level is improving. So far, I have been very happy with this new treatment. Read More Read Less

I have had 4 infusions so far. Already see improvement in energy level and edema. For a few days after the infusion I have headache, fatigue and no appetite. My total infusion time is about 4 hours but I have very stubborn veins which is always a problem but considering a port. Very happy so far with this medication.

with in a month of 1st infusion developed ringing in the ears- for the last 3 months develop blood blisters on hands that dry and peel. Feel horrible for about a week after infusion. Off prednisone and sulfazaline (sp) Eased joint pain but has not done anything for the fatigue, brain fog, or chronic headaches.

I was diagnosed with SLE in 2011 and I started Benlysta infusions in 2012 and it has been a blessing to me. I suffer from severe joint pain, swelling, fatigue, and horrible migraines and since starting the Benlysta, after only 6 infusions, I feel like I am living my life again. My first few days after infusion are still a bit rough, then I start to feel amazing, about 4 days before my next infustion I start to feel I need a refill, but it has been the best thing to happen to me thus far. I do take Immuran and Plaquenil everyday as well, and this combination, has been the one for me, finally. It took a year and four months to find this amazing combination for me, so I just wanted everyone to know it, incase the Benlysta doesn't work on its own for you. Good Luck my sisters, and a few brothers ;), in battle... XOXORead More Read Less

I was diagnosed with lupus in 2010. I had severe joint pain, fatigue and a rash on my arms and legs. In 2012 I began getting Benlysta infusions. At first I did not notice any change in my symptoms. After about 5 months I began to notice that my rash and joint pain were decreasing in severity. I have now been on Benlysta for 11 months and have seen a huge benefit from this drug. I no longer have any joint pain, my rash is gone and my fatigue is noticeably lessened. I have had no negative side except that the night after the infusion I am really tired and nauseous, but feel fine by the next day. Read More Read Less

I have suffered with SLE since 1994 & could no longer take plaquenil due to retinal toxicity. I also have RA & Fibromyalgia & am still on alot of meds for those. I do get insomnia & migranes after the infusion but it does taper off after a couple of days. I started the infusions in March 2012 & do feel better. Unfortunately, a week before my next infusion I start getting very tired, achey, etc. I wish it was not every 28 days I would rather have it every 3 weeks but that is not the case. I am pleased with the results thus far I just wish I didn't have other issues other than the lupus. Read More Read Less

Started December2011. I do notice a big difference in fatigue. My joint pain is somewhat better. The drawbacks for me have been insomina and migraine.

Ive been suffering with SLE for 20 years and have taken many drugs and this seems to work for me. I have only had six injections and I have noticed improvement in my joints. I have very bad night sweats and fever/chills for several days.

I am taking clartin rather than benadryl before the treatment. Benadryl makes me feel groggy. The first 2 treatments were fine, the third was like a miracle... I actually woke up not feeling tired! It lasted 3 days. Now I am getting the treatments once a month. I broke my foot 6 weeks ago, therefore I am not getting the exercise I normally take to feel higher energy. The end result is I am feeling tired and I my ache, probably from sitting on the couch most of the day. I am hopeful it will help. I'll write another input in 3 weeks. My joint pain varies, most days good, some days not. I need to note I am feeling tenderness in my breasts, I'll talk to my doctor on November 7Read More Read Less

I had my first infusion on Friday August 24th. Today, August 27th I feel better than I have in years. Don't get me wrong I did suffer Friday evening and all day Saturday with side effects which included migraine,stomach upset,awful joint pain, and extreme fatigue. However,by Sunday the side effects were lessening and today I feel amazing.The joint pain is there but far less than it was before Benlysta and the fatigue I felt as soon as I woke up in the a.m. has diminished a great deal. This new drug is awesome. I can handle feeling like crap for a day and a half if the rest of the time is this good. Praise God.Read More Read Less