Improvement following Rituxamab : Hi 5 weeks... - Vasculitis UK

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Improvement following Rituxamab

Main1234 profile image
7 Replies

Hi 5 weeks ago my OH had the first of 2 RTX infusions following a relapse of GPA . He is now reducing his steroids now on 15 mgs and increasing MMF now on 1000 per day . He is still feeling fatigued and generally lethargic. He is due for his blood tests next week. Any idea when he will begin to feel better , less lethargic etc. On the plus side his rash has gone, his voice is better and he is no longer getting nose bleeds . Is there any light at the end of this ?

Thank you

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Main1234 profile image
Main1234
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7 Replies
SandieB profile image
SandieB

Hi Main 1234

Unfortunately you dont fell better straight away hopefully a few weeks later you will begin to feel better, also if you are reducing steroids that will make you feel tired but you will get there. Stay safe and think positive .....

Mooka profile image
Mooka

Sorry rituximab can take 3-4 months to kick in and then you start to feel like you need the next one. Once your OH has had a few infusions this shouldn’t be a problem. I can’t comment on the effect of the MMF as I wasn’t given it. There is definitely light at the end of the tunnel. The fatigue may not disappear completely but will improve. Good luck I hope you are both enjoying a better quality of life in the near future.

Main1234 profile image
Main1234 in reply to Mooka

Thank you for your kind words of encouragement, was kind of hoping for a miracle- guess they are in short supply .

Mooka profile image
Mooka in reply to Main1234

It feels like a miracle just have to be a little patient.

trebar profile image
trebar in reply to Main1234

miracles do happen, I think, but it is a busy time for the miracle - maker at the moment what with all that’s going on, I guess. Hope your OH soon feels better.

louise112 profile image
louise112

Hi my rhuemotologist told me rituxamab is a slow burner compared to cyclophosphamide. I had it in June and started to get stronger around September time. I can now stand for longer in the kitchen I was only able to stand before for about 2 mins then had to sit..

Main1234 profile image
Main1234 in reply to louise112

Thank you . Hope you continue to improve . Guess I am just being impatient.

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