Rituximab dose and frequency : Hello. I have been on... - NRAS

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Rituximab dose and frequency

Stynk profile image
5 Replies

Hello. I have been on rituximab for nearly two years now. It works well but at the six month mark it definitely wears off.

Was with Rheumy last week and he is giving me one dose this round as he is worried about side effects of the two doses. Has anyone else had just one and has it worked? I am afraid it won't work as well but understand the concerns over long term effects as I am 43.

Thank you!

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Stynk
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5 Replies
jenna profile image
jenna

Hello, I have been on Rituxumab since 2012 (amazing) I have never had one dose, as I thought they had to administer it in two weekly cycles. Mine lasts between 8 and 10 months, and I must say I have never looked back its been like a miracle to me, had RA for 16years and had every drug for this awful disease ,

Hope it all works out for you, don't forget they are improving these drugs all the time, and we are all complex human beings.

AgedCrone profile image
AgedCrone in reply tojenna

Hi Jenna...your experience cheers me up! I have only had the first two RTX infusions & feel worse than before!

I have had RA for 17 years & have eventually failed on many different treatments - so I feel this is just about my last chance of success.......fingers crossed it works soon!

jenna profile image
jenna in reply toAgedCrone

Hi, I must admit I felt really ill when I first had it and wondered what have I done. But I hung in there and I must say my life has taken on a new meaning for me. As I said we are all very complex, so please don't take my advise as literal , but if you can just hang on and see.

Good luck. Be interested to hear in a few months if you are ok. After all we all want little miracles in our life, so believe xx

AgedCrone profile image
AgedCrone in reply tojenna

Thank you for the encouragement....that is exactly how I am feeling! What have I done? My bloods were through the roof.....but I wasn't in too much pain before the infusions.....now I'm having to dictate this as my wrists are so sore!

I have obviously got the wrong end of the stick too.....I have just received a letter from the hospital with two appointments for two more infusions next April!!!

Ah well....at least I have not been sick over the weekend! Onwards & upwards!

AgedCrone profile image
AgedCrone

I have just had the first two RTX infusions two weeks apart & feel worse than before I started, but I'm hoping it will soon kick in.

I am 70+ & understand that in 3 months time, if my blood tests show it is working & I am feeling OK on it I will have one infusion every six months......but under some (?)) circumstances - depending on the blood results I may be given a weaker dose more often.

It sounds like they can tailor the dose to the person ......& as it is so expensive doctors may have been told to err on the side of caution?

I would wait & see how you go on the one dose......do hope it continues to works well for you....& for me eventually!

AC

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