Belimumab?

[Rach459]

HI all, i have been on rituximab for the past 2 years for lupus nephritis, but im still leaking protein. I have seen my rheumatologist today and she is going to see if i can have Belimumab. Ive read about it and there is some really scary side effects! Anyone else have Belimumab, and how do you feel with it? Xxx

[Sazzy90]

Hi Rach459, I currently have Belimumab infusion once a month. I'm on my 5th dose and touch wood it the only drug which has worked for me. It's brought my DNA levels down from 450+ to 17.

I have had rituximab, cyclophosphamide and neither of them worked for me.

The only side effect I have had is I feel quite sickly the day of the infusion & ive had hair loss (which I find/found the hardest thing to deal with)

Sara x

[Rach459]

Thank you for your reply Sara, im just extremely worried about the side effects, ive read that you can have physicotic reactions! I had a bad physicotic reaction to steroids so this has really put me off. Xxx

[Sazzy90 in reply to Rach459]

I think it's only normal to worry about the side effects! (I'm such a baby try and avoid reading about things as I just worry and panic about them and I personally feel the best way for me to deal with it , is to cross that bridge if I come to it)

But honestly it's the best drug for me and my lupus! xx

[Rach459]

Your right, i google everything! Its nice to know that it is working for you and you havent had too many bad side effects. I will find out soon what my consultant says. Thank you xxxx

[charmaineholmes]

Hi firstly like to say everybody reacts different to drugs .i have been on belimumab had 4 infusion but has been stopped .after the infusion the next day I get up & lost my voice it would gradually come back before next infusion at the beginning but the more I had it my voice was not coming back .I've been to ent & had a camera down the results were not good they can't say if my voice will come back but there main concern was my windpipe has been closing up & they don't know if it will go back after stopping the drug we have to wait & see .in the mean time I can't talk still struggling to eat so living on jelly,custard & smooth soups.i don't want to worry you like I say everybody is different. The drug was helping with my lupusgetting good results we thought finally a drug that is helping but it is too dangerous for me to carry on with it .good luck & hopefully this is the right drug for you .x

[Paul_Howard Partner LUPUS UK]

H Rach459 ,

It can be helpful to be aware of what the potential side effects can be, but please try not to get too anxious about them. Belimumab is a biologic treatment sort of like Rituximab (which can also potentially have scary side effects in very rare cases). It is important that the manufacturers list the potential side effects but in many cases they can be incredibly rare and so you shouldn't expect to experience them.

I hope that some people with personal experiences will be able to share them in the comments for you and help to reassure you. If you are still worried about the side effects, please discuss this concern with your consultant so that you can have a conversation about them, what the risks may be and how they would be dealt with.

[Rach459 in reply to Paul_Howard]

Thank you Paul, yes im hoping to get other peoples experience to put my mind at ease. I dont have any complications with rituximab other than feeling really tired.