Latest update on my WG treatment: Had my first... - Vasculitis UK

Vasculitis UK

7,777 members6,750 posts

Latest update on my WG treatment

suffolkgirl profile image
3 Replies

Had my first Rituximab infusion today. All went well, apart from being very hot and no fans available! A long day, as went to clinic first. Feeling a bit weary, but otherwise ok so far!.

Written by
suffolkgirl profile image
suffolkgirl
To view profiles and participate in discussions please or .
Read more about...
3 Replies
luggsey profile image
luggsey

Glad its going well. Can I ask the reason for you going on ritximab?

My Mum is not getting on well with cyc, it makes her bloods go all over the place.

I was wondering if I could ask for her to have this drug that seems to have few side effects?

A bit of info on the background to being prescribed this drug would be helpful.

Hope it keeps you well!

suffolkgirl profile image
suffolkgirl in reply to luggsey

Hello luggsy,

Sorry for the delay in replying, due to changes on this site.

I was diagnosed with WG in Oct. 2012, and put on 40mg/day Prednisolone, gradually reduced now to 5mg/day. I had 7 infusions of Cyclophosphamide, which I tolerated quite well, and these quietened the disease. Rituximab was suggested as a maintenance drug, but Azathioprine was tried first, as it's much cheaper! However, my liver couldn't take it, and Methotrexate and Mycophenalate were also ruled out, as one could have the same effect as Aza, and the other would not have been good for my one kidney. So I'm now starting on Rituximab. The first dose seems to have gone ok. Next one due in 2 weeks, and then hopefully only every 6 months, probably for 2 years.

I'm being treated at Addenbrooke's.

luggsey profile image
luggsey

I see, thanks for that, I don't know if my Mums anemia will mean a different drug can be tried? She has had six transfusions since March, they must be more expensive then rituximab?

You may also like...

My WG journey continues

after seven infusions, as it no longer appeared to be working, and Rituximab was being recommended...

Update and Further Vasculitis (WG) advice would be welcome

prednisolone a day and, due to having scleritis, I am taking four drops of Acular a day and a...

Latest Update on the HU Upgrade

being tested and restarted. HU will roll them out from the beginning of next week. Changes and...

Anyone with WG in drug free remission?

methotrexate as it makes me feel rubbish and bad tempered for a couple of days afterwards, does...

wg,kidney involvement and steroids

anyone been able to get off long term steroid use,when they have kidney involvement been on the 7.5