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- Systemic Lupus Erythematosus (52 reviews)
- active lupus nephritis (1 reviews)
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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, ...
4 People found this comment helpful
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.
Hi I am a 48 year old mother w/ a 4 year old son that has autism and I suffer w/ horrible lupus that sometimes keeps me in bed for days .., b4 starting the BENLYSTA I would get so hot ?? and sweat ?? like crazy and I would be drenched.,,, also my SED rate was over 70 and I was swelling so bad and that’s how I got diagnosed … I couldn’t walk my feet were so swollen and was having chest pain and trouble breathing so ended up in the emergency room in Critical condition. After days in the hospital I was put on hydroxycloraquine and prednisone vitamin D and vitamin B, Klonopin for bc I was having severe anxiety and also pain meds for all the excruciating pain… but also before I went to the hospital I could sleep for days and my aunt moved in to take care of the baby … so anyways I never really got better and it was just up and down and the Steroid shots and prednisone would help but they had horrible side affects. The prednisone would make me even more tired but it did definitely help with swelling So I was desperate and asked my rheumatologist if there w/ anything els I could do bc I have a 4 year old that needs his mom and depends on me for everything bc of his autism and I’m the only one that understands him so I need to be better and I wanted my life back!!! So my doctor started me on the self injections of BENLYSTA and I am now going on my 5th injection and just let me say that the self injections are very easy and don’t hurt and also very convenient!! After my 1st does I felt tired and a lil achy and mild headache but I did notice that my head was a lil clearer ??…. Also I forgot I did have a mild fever and took some Tylenol. Ok so on on to my 4th does and I realize that I’m not burning ?? up and my sweaty has returned back to north and my husband is so confused bc I also kept at AC at 69/70 degrees and now I have it set at 77/78 lol ??!! My brain ?? fog is so much better I actually sat down and helped my son put a insane Lego set together and I would of never been able to do that b4 the BENLYSTA ……THIS DRUG IS A MIRACLE MEDICINE IM TELL YOU IT HAS SAVED MY LIFE AND IM ONLY GOING ON MY 5th INJECTION!!! I’m sit tired but not as much and I have my good days and bad but I feel that it’s getting better…. I’m still having some swelling and I do get the feeling like my bones Ache … But like I said it takes time and I am truly grateful for BENLYSTA it has got me outta of my depression and I just can’t say enough good things and if I’m already this much better then I can’t imagine after 6 months to a year how I will feel…THK U BENLYSTA FOR GIVING ME MY LIFE BACK AND BEING TO BE ABLE TO DO SO MUCH W/ SON NOW …. ?? ????Read More Read Less
I was diagnosed with SLE the fall of 2018. I had it for much longer but was finally diagnosed then. My ANA was positive and I also have Sjogren's Syndrome and Psoriasis. Fun times, indeed. That being said I have tried EVERYTHING. Plaquenil and I are married to each other for life. None the less it wasn't enough. I tried Methotrexate which just made me worse and lay in bed all day with no energy. I went to my Rhuematologist and told him I had no life, please lets try Benlysta. He said because I didn't have the double strand DNA it wasn't likely to work for me and I got put on Cellcept. With Cellcept I ended up in the hospital because it made me sicker too. Eventually he pulled me off of that and I asked him once again if I could go on Benlysta. His response was once again, no he didn't think my insurance would PA it. Finally I asked again and said a friend that I know who's husband works for the same company got it approved. He tried and it was approved faster than a squirrel riding a motorboat in your cousin's pool. I started with the injections then moved on to the IV. I tell people all the time Benlysta has given me my life back. I'll never be in perfect condition due to my other things but my Lupus is now one less thing I worry about. I'm able to work full time and go thrifting with my parents on the weekend. By the time I got on Benlysta i had tried 6 of the 8 things they recommended before it was allowed and would be PA. If you're not sure about your insurance research and ask questions and don't be afraid to advocate for yourself! While Benlysta won't work for everyone, I can say my experience has been nothing short of fantastic. I'm thankful this medication exists and I'm thankful for my monthly "forced" relaxation. I feel that it is worth all the trouble of my infusion. Don't forget though to ask you doctor's office about the Benlysta gateway so you can sign up for their copay card. I pay absolutely nothing for my infusions between their copay card and my insurance. Read More Read Less
I was diagnosed with SLE Lupus 8 months ago, doctor put me on Plaquenil but it didn't really work. My lab numbers were still high so she decided for me to try Benlysta IV infusions. My first couple of treatments were not great, I had the worse headaches and body aches, slept for two days. But after my fourth treatment I could start feeling a difference. The biggest thing I noticed was that my brain fog was so much better! Felt like someone had lifted a veil off my head and could have clear thoughts again!! Went back after 3 months to do labs again, and my numbers went down. I have noticed now after doing the treatments for 6 months my symptoms are returning some before my next scheduled treatment, so the doctor has started scheduling them closer together to see if that will offset my returned symptoms. I would highly recommend trying this treatment, especially if you had tried everything else and nothing is working. I can tell a big difference! Read More Read Less
Benlysta has been a lifesaver for me! I was diagnosed with SLE two years ago and am currently on hydroxychloquine and CellCept. I have been taking prednisone for more than two years; each time I try to come off the steroids I have a severe flare within a few weeks and have to start taking them again. My doctor finally recommended the Benlysta infusion. After the first loading dose I had headache and extreme fatigue and slept for two days. However, the side effects lessened with each dose. Now, after my sixth dose, I feel amazing! No breakthrough flares, and energy I haven't had in two years. I'm tapering off the prednisone again, and this time I feel like I may not need it any longer. It's worth the time each month for the infusion, and the need to keep very good health insurance despite the high cost.Read More Read Less
Ive been on Benlysta for almost 2 years now. It was added to plaquenil , methotrexate, gabapentin oxcarbenate just to name a few to help treat Lupus Lupus nephritis and Ra. I can tell you that yes the injections hurt but are worth it for me on injection days im sleepy an my eyes water to the point I can't see but doesn't last long an same as the next day but then I have 5 amazing days when before I couldn't lift my own head at all. Its helping me feel normal again i had massive headaches for the first year an even got a migraine diagnosis with my left eye kaleidoscope vision on me but still im sticking with the overall outcome of how my body feels and i can't imagine my life without Benlysta it has changed my life for the better. Before my joints would catch and giveaway id fall. My Reynauds is even responding to injections. I believe that it took me bout a year before I truly noticed a difference so you gotta push through and stick with it. Im more active than Ive been in a decade im lupus lupus nephritis Ra and stage 3 kidney disease the combination im own is amazing an Benlysta just topped me off Im Thankful???Read More Read Less
The reason I started this drug was to help with my chronic malar rash, joint and muscle pain, and fatigue. I was hopeful the medication would do well, but after taking benlysta subcutaneously for 8 months I have seen minor changes. While my rash is less noticeable, it is still present. My issue is the constant brain fog and forgetfulness. It is almost like looking in from the outside of my life. Very strange. I became depressed, detached, anxious, and pretty much a different person. As a full time college student, it is not worth it for me to take if I can't really focus in class or remember small details. I took benlysta subcutaneously and boy do those injections hurt. It made me nervous everytime I had to inject myself because it burns so bad as the medicine is going in. I would bruise after every injection, and get leg pain and muscles spasms for the following couple of days. One benefit I did see was a burst of energy immediately after I injected myself, but it was almost like a feverish energy where I would get super sweaty and seemingly over exert myself and then the energy would soon go away and the extreme fatigue returned. I currently take methotrexate subcutaneously as well and it is much easier for me to inject myself with a needle, and much less painful than Benlysta. Benlysta didnt work out for me but I think it is worth a shot for lupus patients because of the limited number of treatments available. Read More Read Less
I have had severe lupus for about 4-5 years now. I just started benlysta about 6 months ago. This has been the only thing that has actually helped me! The first few months were rough. I would feel bad the day after I got the infusion but now that I am on my 6th month, I hardly ever feel bad. I have so much energy and my joints never hurt! If you stick with benlysta it works! Like I said the first few months aren't the best, but if you give it time it works wonders!
I hesitate to review, as I have only had 1 treatment. I am hopeful that this med will change my quality of life. My main discomfort with the infusion was I could feel a burning up my vein and my arm ached. I believe they are going to dilute and give it slower next time. After the infusion, I was exhausted. I slept for 2-3 days. I'm back to my lupusy self now. I'm cautiously optimistic that this med will do great things. I will review again in a few months â¤ï¸
Immediately following my first infusion I had extreme fatigue and couldn't stay awake. I literally slept for 3 days.. woken by family in between to eat. Then terrible pain in my thigh which spread to all of bones and joints. Agonizing pain .. pain meds took edge off but it was terrible. Blood test revealed elevated SED and was started on solomedrol which helped with bone pain. Then came severe vertigo . Still extreme fatigue and now my muscles are in pain like muscle spasms.i was hopeful this would make me well .. I have been through 3 weeks of hell and wouldn't take this again. For some it's a miracle drug. I'm still waiting for my miracle drug. Read More Read Less
After 1 year I was able to wean of steroids. Joint pain is almost totally gone. Quality of life is greatly improved. Only side effect has been occasional migraine after infusion however slowing the drip rate of infusion and extra fluid with treatment seems to have that under control. It took a year for Benlysta to really kick in for me.
I have had one treatment with intolerable side effects including high blood pressure and muscle pain. I am 78 years old and have had active lupus more than 35 years. Maybe the drug should not be given to elderly patients.
I was diagnosed with lupus in 2010. For two years I tried every combination of medication doctors and myself could find, nothing was helping. In 2012 I started benlysta and two years later started seeing amazing results. My labs are still great hardly any inflammation normal white blood counts. I have begun to have my life back. As others have said with the good comes the bad. I have no idea what would happen if I missed one or two treatments, or if I will ever be able to stop. I am not sure what being on this medication will mean for being able to have a family. It's expensive and going to the hospital for treatments every month is also expensive. I am insured and I still am in debt due to medical bills from out patient visits every month. I do get a few side effects but I tell myself the alternative is worse. I think if you are out of options this isn't a bad one. Hopefully they will come up with more research and better treatments soon. Read More Read Less
I just had my second infusion 3 days ago. After the first one I was horribly fatigued and had severe lupus fog. Although, i dont know if that was the Benlysta or the fact that it was finals week and i was a bit more stressed out that usual. I also had moments of pretty severe dizziness. But i'm still very optimistic about this medication and I hope to be living a normal life again soon.
I have been on this treatment for a while now. My joint pain has gone away my blood test results are getting better. I have had some dizziness,stomach aches, trouble breathing, random rapid heart rate..This medication has helped my lupus but the side effects are too much. I want to start a family and can't even think about that while on this treatment I want to stop but am afraid that I will get really sick again. I'm not sure when to say that's it and see what happenes sometimes I read the side effects of the drug and scare myself. I start thinking the worse and what if...if you have tried everything possible and you have no other choice I would recommend this treatment but be prepared for side effects and understand what this treatment is actually doing inside your body. For all my lupus friends out there good luck and I wish you all the best in your journeys!Read More Read Less
I've had my first infusion two days ago and I'm extremely tired my body hurts and I have a brain fog. Please let me know if that's normal to have brain fog and intermittent speech issues. I really want this to work because the swelling in my chest (lung & heart) are making my life difficult .
I just had my first infusion 4 days ago. Main issue previously was platelet count extremely low. After infusion I have joint pain that I haven't had for awhile. I should reserve judgment until I see test results. Hope things get better in time.
Today was my first infusion. I'm feeling tired, a little dizzy, and small headache. I'm hoping to feel better soon.
Just like everyone else, up to 4 days after infusion, depressed, diarrhea, lethargic. And week before horrific pain and feeling that a flare is coming up. You would think someone reads this and tries to stop these issues.
I have been on Benlysta infusions since 2012 and diagnosed with SLE well before that with many complications from it. This drug has given me so much hope I was having 60 grand mal seizures a year due to my lupus and this drug along with some seizure medicine has stopped them where no seizure medicine was- my only wish is that it would last the full month I get joint pain after 3 weeks and I am quite miserable for the last week until my next treatment - I think it should cycle every 3 weeks but I'm being selfish because I just want a pain free life I've been doing this 25 years and I'm tired. But the drug it amazing and truly a gift- I'm able to walk every day and play soccer with my nephew things I never could do before Read More Read Less
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.
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