Rituxan Question - 4 Weekly Infusions: Hi Everyone, I... - NRAS

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Rituxan Question - 4 Weekly Infusions

Shack1212 profile image
3 Replies

Hi Everyone,

I just had 4 weekly infusions for a very rare autoimmune disease called Autoimmune Autonomic Ganglionopathy. My 1st & 2nd infusion were 375mg each treatment and my 3rd and 4th were 593mg each. My last infusion was Aug 4th. My doctor said it could take 2-3 months to see improvement. Does this 2-3 months start from the very 1st infusion or start after my last (4th) infusion? Also, I feel like doing it over 4 weeks would not be as effective as doing it over 2 weeks like most people do. Since my disorder is so rare, I worry Rituxan will not work. Should my b cells be completely depleted by now? Has anyone done 4 weekly treatments and if so, can you tell me how long it took before you noticed improvement? Thank you for your help. :)

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Shack1212
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3 Replies

Hi shack

Sorry you have a rare condition.

No one can tell you how long it will take for your treatment to kick in as we are all different.

Ritux is mainly used for RA and Lupus and for those conditions always given as a cycle (2 infusions 2 weeks apart.) I had 16 cycles over 11 years.

Did you have the steroid premed before each infusion?

Hopefully that will tide you over until it kicks in.

I really hope it works for me

Best wishes

Kiki 🤞🤞

Neonkittie17 profile image
Neonkittie17

Hi Shack, sorry for your rare condition. Hope Rtx will work well for you. Rtx worked very well for me after 6 weeks but I did have a steroid shot to help my knee at the same time, but Rtx gave me a different sense of well being which told me it was working. I don’t know how long it will be before it starts to take effect for you but hope it is soon. As for the B cell depletion, I was told a “prompt depletion” when I asked, but that is still rather a vague answer, sorry. I do think it’s pretty swift though but not sure if it is days or a week. Sorry not to be able to help much but I wish you luck for your Rtx working for you.

AgedCrone profile image
AgedCrone in reply toNeonkittie17

You want the cells lysed(Killed off) evenly between infusions.After one of my my earlier infusions mine lysed too fast for some unknown reason & although I felt ‘proper poorly’ it did no harm.

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