Rituximab

[Catcon01]

Hello everyone

I have not posted before but read the other posts every day I have SLE, osteoporosis, arthiritus, CKD, amoloid and was recently hospitalised with acute fibrosis of the lungs

I am In constant pain due to broken bones in spine

My Rheumatologist has got me accepted for Rituximab

All my other consultants say it will be good for me

Just wondering if anyone else is taking it and any problems it has caused

Really not sure about it and can’t find a post about it

Thank you

Catherine

[lupus-support1 Administrator]

Hi Catherine and Welcome!

I am also taking Rituximab. It is a very good drug.

The protocol may be different, but essentially, you will be given medication BEFORE the Rituximab to avoid any possibility of allergy. You will also be given corticosteroids, again as a protection for you.

The FIRST TIME of any treatment with Rituximab, usually given annually, is given to you VERY, VERY SLOWLY, as an infusion, to ensure your body doesn't have an allergic response.

This may sound frightening, but I assure you, it's not! Just very boring. My first session started at 8.00am and I went home at 3.00pm! It is given so slowly that should you have any side effects, it can be dealt with quickly. You will be very well looked after and a doctor will come and see you during the treatment. A nurse will also be observing you all the time!

You may have TWO sessions of Rituximab over 2 weeks.

I have 4 sessions over 4 weeks. I have it this way in haemo-oncology because I also have lymphoma. Rituximab is good for both!

It will all depend on your rheumatologist.

Rituximab for SLE takes 3 months or so to kick in!

If you want to talk some more, please contact me here or send me a DM. I am here to help and support.

With good wishes,

Ros

[Catcon01 in reply to lupus-support1]

Good morning Ros

Thank you for replying to my query about Rituximab and your kind offer to contact you

I feel more reassured now as I have never heard of it before

It will probably be early Jan before I can start this but in the meantime will contact you if any more queries crop up

Kindest regards

Catherine

[lupus-support1 Administrator in reply to Catcon01]

That’s fine! I will probably be having another round of Rx about the same time! We can compare notes! It’s a tried and tested drug for Rheumatoid Arthritis as well!

Be well!

Ros

[Kell12]

Hi

I have had rituximab for quite a few years think I have had about 8 rounds and works for me with Lupus SLE, I always have a reaction to the 1st one of the 2 but if you tell them straight away it is then stopped while they give you more antihistamines and the started again very slowly so for me it takes the full day 1st one in last one out 😂 but the second of the 2 always goes through fine so much shorter day. It does last me a while before I need another I think nearly 2 years this time were sometimes only 12 months or so. Good luck

[Catcon01 in reply to Kell12]

Good morning

Thank you for replying to my query about Rituximab

I have never heard of this before and was worried more about the side effects as I seem to get a reaction to everything even the recent Covid jab but now I know it is quite normal and they take good care of you throughout the infusion

Kindest regards

Catherine