Rituximab: I'm still waiting for some answers to my... - NRAS

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Rituximab

Ritaalice13 profile image
9 Replies

I'm still waiting for some answers to my question on how long does Rituximab take to work. I've been waiting over ten week without any success, any advice would be gratefully excepted. God bless you all. One more thing I would like to mention I've been in so much pain since I started this drug, they've given me steroid injection and tablets but refused to give me any more. I'm at my wits end. Seeing the Rhumotolist on the 04 /05/17 can't wait. I just wish they could be more understanding towards this illness.

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Ritaalice13 profile image
Ritaalice13
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9 Replies
Simba1992 profile image
Simba1992

So sorry for your pain. Hope it starts working soon. Found this on the net. Time to kick in seems to vary between 2-16weeks.😓

arthritisresearchuk.org/art...

Ritaalice13 profile image
Ritaalice13 in reply to Simba1992

Thank you for your kind words, it really helps to have people who understand.

Hi Ritaalice13. Sorry you've not had much success in getting the information you need. I don't know anything about it myself, but have you tried going into the 'Search NRAS' box, top right hand of the page? Type Rituximab, there you might find several post which may give you some answers.

Good Luck

Ruth 👍

weathervane profile image
weathervane

It took about 3 mths the 1st time for the rituximab started to make a difference however after the second course it has been much quicker. I really hope you start to feel better soon as it is a big decision to have this treatment . Sending you all my best wishes 💐💐💐💐💐💐

Lucy11 profile image
Lucy11

So sorry you are having a hard time. My doctor wanted to put me on Rituximab and let me know that it really is personal when the drug kicks in. For all Biologics he generally recommends giving it three to four months before even considering a switch. You were undoubtedly given a steroid infusion before each Rituximab dose which generally helps people feel really good for the first one or two days and then it levels off. I'm not sure if you're including that in the steroids they have offered you as it's a pretty high dose.

If you received and injection on top of the infusion of steroids and are taking a daily bridge of Prednisone until the drug kicks in by all rights I would have hoped it made you feel some relief. I'm not sure they can give you much more than that.

I know May 5th feels like an eternity and on top of that you're probably experiencing loads of stress with the pain and frustration of why you don't feel better yet. If you're feeling really crummy do try to ring the hotline as they can try to put your through to someone who is also on Rituximab to have a chat with.

I chose a different Biologic which was a bit slow to work and after four months we almost decided to switch to a different one but I wanted to stick with it and now after 7 months I am doing very well.

It's so very difficult playing the waiting game and I definitely sympathize with you. I wish I could help you more but I do know that for a good majority of people it does get better.

Big hug!

Chanel47 profile image
Chanel47

Hi, I had my first 2 Rituximab infusions in December 2015 and it took until April 2016 to kick in. When it finally did though it was fantastic and has worked better for me than all the others - MTX, Cimzia etc. I did feel I was getting worse in those few months before it kicked in though. I had my second cycle last December 2016 as it was wearing off slightly and it soon got me back on an even keel. I do take 1500 mg of Sulphasalazine daily also. I hope you have some results soon.

rawillbebeaten profile image
rawillbebeaten

Hi, I've had two sets of Rituximab and I do think it works. My RA went out of control but is now settled. A bit of a saga, which I won't go into, but the 2nd batch was in Sept, the 2nd and 9th. It wasn't dramatic but in mid November I definitely felt a boost in the way I felt and my inflammatory indicators are much lower. I was told 12 to 16 weeks to have an effect and symptoms would continue to improve after that. As always on this site everyone is different and it may not be the drug for you. Keep on letting your Rheumatologist know your symptoms and how you feel and be firm but calm about what you want - more or different pain relief. I'm sure that they will want to wait for at least 16 weeks to see if Rituximab has worked but there will be more options for you I'm sure

Wishing you all the very best

Michele

AgedCrone profile image
AgedCrone in reply to rawillbebeaten

With Retuximab I think it might depend on the speed it attacks the Bcells & they stop causing problems. After infusion 2 of first set I had a bit of a reaction......felt really flue like, nauseous, stiff & in pain. I saw my Rheumy & he reckoned the RTX had killed off these cells all in one go instead of over a period of time.

He gave me a Depo injection, & at first I thought it was the effect of that making me feel better, but I am now I am half way through second set of infusions ( had first set in April 2016) & feeling better than I have for years.

I think this Biologic seems to take different times to kick in with each individual....so giving it time seems to be the only answer!

CloudTreeDrive13 profile image
CloudTreeDrive13

Sorry to sound harsh but i'd say you need some patience. I know it's easy for me to say but how long is a piece of string ? Bear in mind people react so differently to meds. I am supposed to have an infusion of Ritux every 6 months but i have gone nearly a year come June. My R A is started to play up telling me i am probably now due an infusion. You need to wait a while in between steroid injection as there are consequences. I don't mean to be negative just practical and i do wish you well xxxx

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