Hey everyone. Thanks for your support on my first post. I have decided to stick around.
So I go for my first Benlysta Tuesday. I’m not expecting it to help. Frankly I’m expecting 3-4 days of yakking my guts out while working remotely if my Zofran doesn’t work and never doing it again. I’m more scared about the actual process.
I have been through so many IVs, shots, etc that this should be easy. I mean… I have gotten the ANTHRAX vaccine when I was in the Air Force. A GEL vaccine.
So… Can you feel the medicine going in? If you have side effects how soon do you start feeling them? Am I going to start barfing during the infusion?
I’m only asking because any drug with nausea as a side effect is a 100% guarantee to make me nauseous. I have a severely overactive CTZ center in my brain. Zofran isn’t a medication for me- it’s a diet.
I was really trying to go alone. I couldn’t do it. I ended up contacting my aunt and she’s going to with me. I’m glad. Nice to have her. She’s non-judgemental and I’m sure she will stay with me if I’m too sick once we get back home at least until the hubby gets back home.
Did anyone not get side effects? I’d love to just take this and go back to work. I really doubt I will have that luck.
Hi, I recently started Benlysta as well so far 5 treatments. I was scared to death my first one and made my husband take the day off work to go with me. I will detail my experience for you so hopefully it wont be as scary and unknown. I got to the infusion center and checked in, they took my into a room to meet a doctor (apparently you have to be under someone at the center to sign off on drugs) he asked about nausea meds zofran is in my daily regimen as well so I told him I preemptively took one. They then took me to the infusion room set a catheter and gave me 2 benadryl and 2 tylenol as a premed and set up my fluids. I was in a flare at the time we started treatment so I got a huge know in my arm as my silly body was freaking out about the catheter and I already have really crummy veins. After a hot pack a new cath in the other arm and a big dose of IV steroids to stop the attack on the catheter we set up the infusion. Since I get nauseous if someone looks at me we ran it over 3 hours instead of 1-2 as they usually do. I fell asleep from the benadryl and woke up to my machine beeping. The nurse came over took down the empty benlysta bag and started straight fluids for 30 minutes to make sure I didn't have an allergic reaction. When I got home I took a nap, benadryl really knocks me out, I got up and did some chores. I didn't feel anything really. The next morning I had to go to work I felt fine actually a little better probably from the big steroid dose. My infusion center did have me get a port a cath to avoid catheter issues in the future. The first week after I felt pretty good only a day or two of gi problems but nothing severe at all. I will warn you the first couple doses a few days before I was due to go in I felt like all my symptoms returned ten times worse perhaps it was because I felt better for a few days or I crashed because I was due for treatment again. Now I do pretty good I get worn out more quickly the week I'm due for infusion but that week after I feel like a rock star compared to before. I can feel it wearing off and I wish I could get it every 3 weeks instead of 4 to avoid those bad days right before infusion but as of now it is helping I am able to go in the morning take a quick benadryl induced nap when I get home and be back to almost normal by dinner time. I hope me experience helps ease your mind about it. It really has been a huge help to me. I hope it goes well for you also. If you need anything or want to talk about treatment feel free to reach out to me I would be more than happy to talk about it with you.
Mel, personally I have been through 3rounds of Benlysta and my fourth will be on July 28. Then it will be up to the rhuema to see if it has worked. Personally its not bad , you go to an infusion center and the medication takes one hour . In my hospital the put in an IV and I am just sitting there in order for me not to get side effects they give me 2 tynenols and a benadryl. After the medication my rhuemy told me its normal to have lupus symptoms . I had mild symptoms joint pain and a rash. For me it doesn't prevent me from working, and like with any medication you have to give it time to work and they always start on a low dose..Have faith on the medication and Good Luck.
I just had my 11th treatment, and have been doing well on it. I was scared as well to start, but didn't have any bad side effects. I think because they give the Benadryl infusion first is what helps. I too have a rx for the Zofran, but haven't had to use it but a couple of times. Good luck to you, feel better
I have posted my follow up. Unfortunately my first loading dose has gone quite roughly. But that’s ok. Maybe that means it’s working better. I am committed to this 100%.
I have a question regarding this. Is it common for someone with Lupus to have issues with IVs (what I assume a catheter is)? I ask because my veins, especially as an adult, have never seemed very tolerant of IVs. I can FEEL it in there, can feel every tiny movement I make affect it, and inevitably it will aspirate and force them to redo it. I just assumed this was me. Could this actually be due to my body reacting to the IV in a Lupusy manner?
I apologize that this doesn't have to do directly with Benlysta (though that may be my next medication step anyway, so I suppose it IS somewhat relevant), but it really made me stop and wonder.
Heather_Michelle said:
I was in a flare at the time we started treatment so I got a huge know in my arm as my silly body was freaking out about the catheter and I already have really crummy veins. After a hot pack a new cath in the other arm and a big dose of IV steroids to stop the attack on the catheter we set up the infusion.