Hi everyone
My Dr is starting me on Belimumab Benlysta and I just wanted to ask what people's experiences have been, particularly with the physical injection and pain side of things. As I have been on fragmin in the past for pregnancy and really did not enjoy that and struggled doing it / had to get someone to do it for me.
Also how did you feel on it please?
Just a bit nervous about it all. Thank you in advance!
Hi, I started on Belimumab infusions, then went to injections, unfortunately I still flared often on the injections ending up with hospital stays, so now back on infusions with, currently no flares. However the actual injections are easy to administer, I did find it painful but its only a few seconds. I didn't have any other side effects. Hope you get on well with it. Good luck
Hi, Thank you for your response, I’m sorry it didn’t work for you but glad you are doing well on the infusions. Thank you!
I’ve been using the self injector for about a year. It couldn’t be easier and it has definitely helped my joint pain. This has been a highly stressful year, but so far I haven’t had any major flare. Sometimes it burns as it’s injecting, but it only lasts a few seconds. It seems to help if you make certain it’s a room temperature. It’s worth it to me to be able to give it to myself at home rather than spending half a day at an infusion center
Hi! Thank you for your response, that’s amazing im so glad it works well for you. I suppose i have to think of the benefits vs the injection, i just get so nervous having to inject myself. Do you have any noticeable symptoms from the injection like fatigue afterwards or mood changes? Thank you
Nothing that I’ve noticed. It has definitely helped the pain and swelling in my hands.
Hi I have been on this treatment since March. My treatment is a monthly IV in a rheumatology day ward. It has worked amazingly well. I came very close to dying in March. After that my muscles were being attacked, leaving me unable to hold my head up. My chin was on my chest. I could not lift my head up.
When that happened it was the most devastating event in 30 years of Lupus attacks. I also had a haemorrhage in an ulcer in my osepogus in December 2024 heart attacks in January 2024. My fear was, as I live on my own, that my body would not withstand another event.
The brilliant rheumotologist that treats me, Dr Wright, came up with this treatment. I have had no side effects and I can hold my head up with no pain. It is quite miraculous. I'm stable, although alot of the prior damage is still causing major issues, so I am gratefull to be on this drug. At a ward round the doctors remarked that it was working for all the other patients being treated, which is good to know.
So good luck and hope you benefit.
Hi, thank you for your reply! That’s incredible to hear your outcome, it’s always good to hear these stories so thank you. Fingers crossed it works well for me too, as Rituximab wasn’t good for me I ended up with an anaphylaxis reaction unfortunately and cannot try it again. All the best to you xx
Just noticed your post. I was given a monthly infusion at the hospital initially and found it challenging. I suffered from the pre-meds that comes with infusion and had felt unwell for about a week before I started feeling better...so I could never tell whether it actually worked or not. But since the weekly subcutaneous injection at home, it has been really helpful. Initially I found it very painful as I followed the instruction in waiting over just half an hour after taking it out of fridge. But the pain is far less when you let it come to room temperature longer. So now I wait about an hour before I inject. I clean the area with surgical spirit first before the injection. I asked a doctor friend to look into it before I accepted Belimumab. He told me it was designed for pregnant women in mind as a much gentler version of Rituximab. He said it was a very sophisticated and advanced therapy and got excited.
Like you, I found Rituximab not helpful and actually the opposite. I ended up at A&E! A long story. So yes, Belimumab is much gentler and kinder but effective. Good luck!!
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