Rutuximab

[Turquoise1999]

Hiya Everyone.

Haven’t been really well for the past few months.My Lupus (SLE) really flared up.

Went to my doctor today and he recommended me to start rutuximab.

Has anyone had rutuximab?

Please can you share your experiences as I I am but worried.

Also do you have to have all 4 of your vaccines to receive rutuximab.

Thanks

[CarolMcl]

Hi. Sorry to hear you're in a flare. I started rituximab this year, I've had the first 2 infusions, next one due at the end of July/August. I can honestly say the only side effect I've experienced is that I can't sleep on the night I receive the infusion, rheumatologist agrees that is probably down to the steroids given IV as a pre med. With regards to the vaccines, I received my 4th before I began the infusions to hopefully give it a chance to work. To get my 5th vaccine this Wednesday

[Loopy1971]

Hello Turquoise1999. I’m having my first lot of Rituximab on Thursday. I’ve had 5 plasma exchanges over the past week in readiness for my two lots. Try not to worry too much about it. I know that they will put a cannula in and it takes about 4 to 6 hours. I’ll let you know how I get on. You don’t need all 4 vaccines to have Rituximab. When did your doctor say you’ll need to start?

I know what it’s like having bad flare ups with SLE, I’ve been in hospital for the past two weeks with mine, and unfortunately it has affected my brain, heart and kidneys. Thinking of you x

[Turquoise1999 in reply to Loopy1971]

Hi, Thanks for sharing

Yeah it’s been really painful and difficult month for me.

They gave me a steroid drip today to help taper down the pain and swelling in my body and in my skin.

My doctor said hopefully in the next few weeks I should be able to receive the treatment but first a few tests need to be done to ensure I can get.

Hope you are okay too, I can’t imagine how hard it has been on you.

Stay strong and you will hopefully be able to fight this hard time. x

[Sarahze in reply to Loopy1971]

Please can I ask how it has effected your brain, heart and kidneys? Thanks

[weathervane]

HiTurquoise , i have been receiving rituximab infusions for years and they have really helped my symptoms. I haven’t had really bad side effects other than low white cell count, but was low before I started 🙄I had to stop for year while had radiotherapy, i also had to delay 4th vaccine so i had rituximab with 3 vaccines . I had to wait for 8weeks after 2nd rituximab infusion to have 4 th vaccine, which i just had yesterday !

I hope you find it works for you, best wishes xxx

[Cherrytheperi]

I had rituximab about 10 years ago.It was given to me once a year -2 infusions approximately 2-3 weeks apart for three years.My lupus was really active until this point but it calmed it down and since then I have only had minor flares without hospital admission.

The only side effect was leaving me slightly more vulnerable to chest infections when I got a cold.This lasted for five years which is usually the time the rituximab works for but now I have built up normal resistance to bugs!

If you have been lucky enough to have been offered it as it’s very expensive,I would definitely be optimistic and I hope it goes well for you!😀

[BDS86]

Hi,Apparently it's a good treatment but i could not tolerate it.

I hope you will have a positive experience with it.

[mobilitymiss]

Hi Turquoise, I had rituximab for the first time at a month ago and a second dose 2 weeks later. I was terrified but had no problem apart from or short lived sore throat. The nurses were amazing, I hope your nursing team are as good x

[blessing40]

Hi, I have had rituximab for about five and it is quite effective, it did help and I went in to remission for about 3years . After that the lupus came back with a vengeance and my Rheumatologist thought we should continue but because I had used for too long then it stopped working and then we started cyclosphosmide which actually didn't work. So no now I am on Benlysta belimumab I ham hoping for the best. So please don't be anxious about rituximab the side effects are not so bad and it works.. Hope that helps, get well soonest 😘

[Turquoise1999]

Thanks everyone for replying and sharing your experiences.

Hope you all keep well

[Loopy1971]

Hi Turquoise1999. I had my first Rituximab infusion yesterday, all went well. I didn’t sleep well last night, but they said that would probably happen, due the amount of steroids Pre-med. Apart from that, all is good, so far. The only downside was having to spend 6 long hours hooked up, so make sure all your devices are fully charged before going in 🤣🤣

Good luck, thinking of you xx