First Rituximab Infusion: Hi all I am waiting... - Vasculitis UK

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First Rituximab Infusion

russellk3 profile image
14 Replies

Hi all I am waiting on blood tests to come back to see if I can have Rituximab instead of Azathioprine for my gpa my blood numbers are creeping up my consultant thinks it will be better for me he has given me a booklet and I have read lots of info from web just looking for some info from others when they had their first infusion i,e how long it took and how they felt next day as I still work and will need to let my employer know if I need sometime off or not thanks Regards Russell

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russellk3
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Birmingham64 profile image
Birmingham64

Hi

I have had 2 Rituximab infusions so far & due for another 2 shortly,the 1st infusion was about 6 hours as the infusion goes in slowly in case of any reactions but antihistimines were also given before,the 2nd infusion was a lot quicker only 3 1/2 hours due to me not having any reactions to the 1st infusion. I felt quite tired for a few days so i have about 3 days off work each time & then i feel ok. Hope this info helps

russellk3 profile image
russellk3 in reply to Birmingham64

Thanks for taking time to reply

jgold profile image
jgold

I was put on Rituximab in similar circumstances, i.e. Azathioprine not working satisfactorily.

First of two infusions about 5 hours, second about 3.5 hours. No problems in either case and no after effects.

Consultant expected this dose to last 6-12 months, but in fact it was 18 months before I needed a third infusion. So the switch has been well worth it, and in my view would still have been worth it even if the Rituximab infusions had generated some temporary side effects.

russellk3 profile image
russellk3 in reply to jgold

Thanks for taking time to reply

Mooka profile image
Mooka

Hi Russell

Rituximab takes a while to work. It can take up to 4 months before you feel the benefit. I have had several courses over the past few years and my Vasculitis is now in remission without me having infusions. It has however stripped me of my immune system and I am left fighting infections on a regular basis and have to inject immunoglobulin weekly to replace my depleted immunoglobulin G.

I hope rituximab works for you and you get some relief from your symptoms.

russellk3 profile image
russellk3 in reply to Mooka

Thanks for taking time to reply

Guna1003 profile image
Guna1003

Thank you for asking this question. I am going to have rituximab infusions sometime in the next few months, pending the insurance approval. I'm a little nervous but looking forward to feeling better!! 🤞 Please share your experience after treatments. Wishing you the best!

russellk3 profile image
russellk3 in reply to Guna1003

Thank you will post my experience when it happens hope you are well

JennyH-M profile image
JennyH-M

I think everyone has a different reaction. My infusions take about 6hrs, and I felt dreadful for 2 weeks, but gradually improving over the months

Best wishes

russellk3 profile image
russellk3 in reply to JennyH-M

Thanks for taking time to reply hope you are feeling better

MauriceO profile image
MauriceO

Hi Russell

My husband had 4 rituximab infusions initially, then one every 6 months. On the first one he had a slight reaction during it but they slowed down the dose and he was fine then. They took approximately five hours each but sometimes he would have to wait for the Rituximab to arrive in the infusion suite. Never had any problems afterwards and sometimes drove home himself. Never needed to take any time off work afterwards. He worked as a postman.

Hope it goes well for you!

russellk3 profile image
russellk3

Thanks for the reply hope your husband is doing well all info is appreciated

stuc profile image
stuc

Hi Russell. I was diagnosed with GPA in 2017. I have had 2 relapses in the last year and each time I had 4 x weekly infusions of rutixumab. My consultant wanted me to continue with azathioprine at the same time. It will take 5 -6 weeks before you feel the full benefit. The infusions react differently for all. I found that I was really tired and had no energy throughout the 4 weeks of the infusions and ended up having to take 5 weeks off work each time. You will also need to be very cautious of catching infections as the rutixumab wipes out your immune system. Hope all goes well.

russellk3 profile image
russellk3 in reply to stuc

Thanks for the reply stuc I have had gpa since nov15 haven’t had any relapses so have been lucky hope you are well

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