Just wonder if anyone is taking it, I'm a little leery right now.
thank you, Sharon
I have been taking benlysta for about six months now, one infusion per month. It is difficult to tell if it is helping with my lupus, but my doctor says it takes a while to determine how effective it will be for each person. He also believes there is a chance, albeit a long shot, that it can also help my interstitial lung disease, which has robbed me of 70 percent of my lung capacity. He did say that if benlysta works for a person it can reduce the need for prednisone. I have had no problem tolerating the treatment, which takes about an hour and a half to complete. I have had no significant side effects, if any, from taking the benlysta treatments.
Thomas Franklin
I have been on Benlysta for about 8 months now. There has been a drastic improvement in my labs and I have tapered off my prednisone completely and only take a small 5 mg dose as needed if I feel like I am very painful or swollen. As far as how I feel, despite the change in my labs and a negative ANA which I have never had before, I don't feel like I feel as good as my labs are showing. My doc said that as long as it is showing improvement in my labs that is the main reason for taking it as it is slowing the damage. I still have most of my symptoms but they are less for a couple weeks after treatment. I hope it works for you I have not had any adverse side effects from it as long as I get an additional bag of fluids with it. I did have to get a port a cath for treatments as I have no veins that they are able to access and that has been a life saver. It is a small port under the skin only chest that ties into the main artery in my neck. They are able to do all my blood draws and infusions in this port so I don't have to have my arms poked anymore for anything which is great. Something that if you are looking at infusion therapy for a long time I would highly recommend. Good Luck with treatments.
Hi Sharon.
I took Benlysta for 7 months. I had much less inflammation and joint pain after my 3rd infusion but things turned worse with the 7th infusion. I had chest pains and my blood pressure kept increasing so much so that I was hospitalized when it topped 190/132 and 4 medications would not reduce. The Benlysta was discontinued and my joint pain increased. I felt like I was crippled. I needed crutches after developing horrible knee pain. I was then given Humira injections every week which helped after 3 weeks. I'm sure this is not normal for most. I was told by my doctor that many patients have a better outcome with Benlysta.
Happy Holidays and I wish you a healthier 2015.
I am on it now----for about 3 months. Was on it several years ago, when it first came out, and it was thought that three months was long enough to see if it made a difference. Now, researchers know it takes 6-12 months. I think it is definitely worth a try. I don't have a problem with the infusions--have good veins and no need for a port. Have had no side effects that I know of...I am also hoping to get off steriods. I am on 5mg twice a day and will soon try to get down to 7.5 once a day. I understand it can take a LONG time to get off steriods....but the Benlysta may expedite the process. Benlysta works in 1/3 of patients. So I say= nothing ventured=nothing gained! All the best, Sharon. LupanCatwoman P.S. There is a great LUPUS book out now---by Don Thomas MD I believe---it is reviewed in the book section here. He is a rheumatologist at Walter Reed Hospital and has spent his life studying Lupus and related issues. He gives a lot of info on BENLYSTA. His book just came out this last year---it really taught me so much. You can get it used on Amazon or maybe free at a library.
I have been on Benlysta for about a year, and feel much better....not a cure all by any means. I have been having a terrible time with high BP though. I was told probably not Benlysta, but I wonder. I have had no side effects, my veins are fine, so far. Good luck.
I’m in the same boat as heather-Michelle. I also had to have a port because my veins have been used too many times. It’s very convienant. If hospitalized though, tell them you have the port. No one wi know unless you say to use it. I’ve been on benlysta since April. I’ve been off presnisone now for a year, which was prior to the infusions. I do have the same pain as all other lupus patients but with benlysta I found I have a bit more energy. To those who know about the spoon theory, u have more days now with more spoons. I’m still on my normal lupus meds along with benlysta. My ANA also came out negative but I don’t focus on that because it changes time after time again. The only real side affect I get from the infusions are bad stomach pains. I have this “cocktail” as they say with a mix of three meds and soothes the pain. I sleep a few hours and then the following day I’m better. No doctor can tell us what the long term affects of benlysta are but it’s giving me more energy and I’m going to ride it out. Someone also mentioned their knees. I don’t think it’s in relation w benlysta but lupus itself. MRI of lumbar showed nothing connecting w my knee pain and weakness. My knees give out and I fall frequently. The knee specialist tried cortisone injections and it didn’t help. I’m seeing a neurologist soon. I’m afraid I’ll go from a cane to walker and then what? My knees are a big fear of mine right now. It’s hard to get out of a chair or toilet if they are too low and I have to watch going down steps. I can no longer stoop or I’ll get stuck. Anyway, if anyone else reading this have answers as well about their knees please share.
thank you so much for everyone who replied. My concern is I don’t want to turn out like my aunt who is in a wheelchair. The SLE attacked her bone marrow and she has stage 4 kidney failure. I’m still working in a grocery store and HR is allowing me to work the express check stand and the early shift so I can go to the pool for pain management. I use a shopping cart at work to walk with too. I am in constant pain and fatigue as all of you. My fear of trying the new medicine is the allergic reaction can cause death and I have allergies to some medication they have tried. I will ask my Dr if they can test me first to see if I’m allergic. And thank you for the book information too Lupancatwoman.
My prayers are with you all, and as the song may say one day at a time sweet Jesus I say one step at a time sweet Jesus and thank you for that step too.
Sharon
Sharon: I too am very allergic to many medications. My doctor has them give me Benadyrl and Tylenol with my infusion, and have had no problems. Good luck to you, and feel better.