Rituximab ....: Hi all, I've been having a... - Vasculitis UK

Vasculitis UK

7,759 members6,736 posts

Rituximab ....

CHARLIE49 profile image
5 Replies

Hi all,

I've been having a Rituximab infusion every three months (used to be two every six months) and went today for the latest one. Am feeling really disheartened as my blood pressure went so high they had to stop the infusion. I am so gutted as I have been doing really well on it and this has actually been the best three months I've had for years. Unfortunately, my specialist was unavailable when they tried to contact him so I've been told to see my doctor, which I am this evening (my surgery are so fantastic).

Has anyone else had this and does this mean I can no longer have the infusions. I don't want to go back to methotrexate as that disagreed with me too.

Thanks :)

Written by
CHARLIE49 profile image
CHARLIE49
To view profiles and participate in discussions please or .
Read more about...
5 Replies
SandieB profile image
SandieB

During one of my infusions my blood pressure shot up the nurses elevated my legs and slowed the infusion down and eventually my blood pressure fell. Had you been on your feet ie to the toilet or anything when this happened. x

CHARLIE49 profile image
CHARLIE49 in reply to SandieB

Hi SandieB. No I hadn't been on my feet and I was lying on a bed with my legs up. Saw my GP last night and this morning as he wanted to keep an eye on me (which is reassuring) and he has decided to change my BP medication. Hopefully I will be able to continue with the Rituximab in future. Do you have that too??

SandieB profile image
SandieB in reply to CHARLIE49

Hi Charlie, yes i have been on Retuximab for 4yrs now but only have a maintainance course once a year now. I had my bp tablets changed last year as to rule out what was causing my cough as Retuximab can cause a cough but mine was caused by my sinusis. Hopefully you will be ok x

2534 profile image
2534

Im so sorry your infusions have been interrupted by the high blood pressure. Can you tell me how you managed to get them every 3 months. My sense is that one every six months is not doing the trick. Take care

CHARLIE49 profile image
CHARLIE49

Hi, apologies for the late reply. I was originally having two infusions, two weeks apart, every six months, but my symptoms and rashes were returning well before the next infusion. It was decided by my specialist to then have one infusion every three months and this works better for me. The three months up to this latest infusion had been my best so far, then my blood pressure decided to rise grrrrrrrrrrr!!!!

You may also like...

Rituximab

wondering if anyone has had any rituximab treatment whilst all the lockdown has been in place. I’m...

rituximab

you flare? or 2 years ? 1 year ? 6 months i hd 2 doses 15 months ago and am told i only have it...

Bloating and Rituximab

trust you all had as good a xmas as possible given the diseases we endure. I have been like an...

rituximab and vasculitis.

it. I've been diagnosed since july 2010 with Anca + vascultis after 10 months of being told i had...

Rituximab experience?

my aorta still. I have just started Rituximab infusions. This has made me feel even more fatigued...