LOOKING for advice on BENLYSTA! Has anyone had infusions with BENLYSTA, and if so can you give me some advice if it works for Systemic Lupus. I am due to have infusions but before i decide on this risky medication I want to make sure it works. I have already had heart failure & 2 major surgeries recently not sure how much more I want to do. I know my Systemic Lupus is active but there’s gotta be more options.
I am currently taking Benlysta. Had my second full dose last week. So far (fingers crossed) the only side effect I have had is my body feels like it weights a ton after treatment. After my first test dose I did have some stomach pain. My doctor gives me premeds before getting the treatment, because I have had reactions to a few other treatments. Benlysta was my last hope due to my stomach problems.Good luck, hope it works for you.
I’ve been doing benlysta infusions for over 6 months now and I’ve noticed it gives me more energy. No serious side effects. Gained some weight with it.
ar Amanda, Sorry to hear about your difficulties. I have Sjorn. Syst.,, chronic anemia, & Lupus. I was taking Planequil, Methoxtate (chemo), and Presidone when needed. After 3 mos. straight on Pres. it stopped working! After reading the research on Benlysta - I realized that it was giving me the opportunity to live longing and stablize my Lupus somewhat. My ankles & feet were always swollen (sometimes I could only wear Croc flats) and the rashes with flares ups was bad and would last a long time and sometimes scar. SINCE BENLYSTA I have very little swelling and rashes are only minor now. White count was as low as 2 but now is 3-4. My chronic anemia is serious and I usually get a Procrit shot every wk. along with a blood test every 2 wks. Without the Procrit I could not drive, work part time, and would fall asleep all the time. I considered the possible side effects of the BENLTSTA - but I feel like my time is limited as it is. My faith in God, family & friends are my support system. I feel very blessed. You will make the right decision! Take care. Peace, Helena.
It will be a year in April that I have been on Benlysta infusions. After 5 infusions, I decided to get a port, as I was tired of being poked with an IV every month. The first 2 months they were every two weeks and after that it is now once a month. In the beginning, I had didn't feel much of a difference and had headache as a side affect. After several infusions, I began to get more energy and wasn't taking naps every day. My flares are father apart and my blood work has improved. After each infusion, I go home and sleep about 3 hours. After that, I can go on with my routine. There are months though that I've had real bad stomach issues. My Dr. prescribed a "cocktail" that I use if the stomach begins contracting. It is Mylanta, Lidocaine, and Phenabarbitol (sp?) Those three together make about a shot and it helps so much. Remember though, every Lupus patient is different and will respond differently with each medication taken. If or one, cannot take Placquinal. I lost my hair and had bad side affects. So, just be careful when getting advise from others that it's their experience and to talk to your Dr. I think it's a great idea to look into the meds before taking them, even if the Dr wants to place you on it. I go online and look at everything and then decide if it is worth it or not for my own body. We know our bodies and how we feel and what it's like to have side affects. I love my Dr and she is always talking to me on how I feel regarding predisone. I hate it and decided to not take it unless I absolutely have to have it. I rather endure some of the Lupus issues that predisone may help with so I don't experience the weight gain, bloating, and risks to my heart. So, I hope that gives you some information to think about and I wish you well when deciding to make your decisions.
Amanda
I had my infusion this morning I have been on it for 6 months now. I went to the Benlysta site and read their info. We are all different and react to meds differently. Most of the time I have stomach issues for a day or two and a mild headache. As with every med their are people that will tell you it is wonderful and some will tell you they could not tell a difference. Let us know what you decide.
Amanda," purplebutterfly " is right… different people will react quite differently with Benlysta… some may take 6 to 8 months to see a significant difference in their lupus…some will see and feel an improvement within a month or two. The side effects are also different with each individual. What I know is that Eventually Benlysta does make a diffrence… what you need to do is to monitor your situation and progress and make sure you share your results with your doctor who is overseeing this treatment.
Hope this helps.
just wondering what else you have tried at this point. in my opinion and only an opinion I would try plaquinel and other less harsh medication first. but I also don’t know how bad you are at this point. they may be skipping all the less harsh stuff for a reason. I was on Imuran high doses of prednisone and daypro. my kidneys were failing and that brought me out of the flair saved what was left of my kidneys and put me in remission. I did gain 80 pounds and it took me two years for mugger to loose that weight and for my face to go back to normal. so it really does depend on doctor and you.
Thank you so much for all of your help and responses. It helps to hear BENLYSTA works or does give some relief in some before trying yet another medication. I guess you could say I am not in the best of shape right now I recently had a implant done to monitor my heart because they felt I would be going into heart failure again soon, already on Chemo and Prednisone tried Plaquenil but couldn’t handle the side effects. Have also tried multiple other drugs which have all failed for me and still left me in heart failure and ongoing lupus flares so BENLYSTA really is my last hope.I am feeling much more confident about it now.
I have been taking the Benlysta treatments for over a year now, and have had much more energy, and not as much pain. I started noticing though the past couple of months, that I'm not feeling as well as before......but I don't know that has anything to do with the Benlysta. We all react differently. I hope you at least give it a try. Good luck, and feel better.