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Date: 24.01.2012
From: Liane (24)

Subject: Rituximab

Just a quick note to anyone who is considering starting on Rituximab.

My arthritis was ridiculously bad last year. Tried Enbrel and Cimzia without much success and then had my first dose of Rituximab last June and had my second dose over xmas. It's worked wonders for me! The swelling and pain in my joints has gone and I'm much more mobile now.

I hope it works just as well for anyone else that is on this treatment!
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Date: 24.01.2012
From: Colin

Subject: Re: Rituximab

good to here it worked well for you , try Endrel last year & going on Infliximab in next few months , wondered if Rituximab worked well but we got to try two unti TNF first before they let us go on it
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Date: 24.01.2012
From: Liane

Subject: Re: Rituximab

Fingers crossed that the Infliximab works for you! I found the waiting between stopping one treatment and starting the other to be the worst part of trying them all out.
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Date: 24.01.2012
From: rhona

Subject: Re: Rituximab

Hi Liane, It's good to hear that you feel so well. It gives the rest of us hope to know that there is lots of different drugs now and it's just finding the right one. I started enbrel 3 weeks ago and hoping it kicks in soon. Keep well. x
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Date: 26.01.2012
From: Serah

Subject: Re: Rituximab

Hi there!!... i'm starting rituximab in two weeks from now, and i am hoping it might work after failingwith remicade,humira and actemra!!:S However, i am very worried about its side effects which i saw on the net especially the one called PML infection which is fatal !!.. please do you have any ideas about this...please help me with any info or experiences..
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Date: 30.01.2012
From: sue

Subject: Re: Rituximab

I too have been offered retuximab.I have however refused it, because of the risk of PML.I think it's a personal choice.I know it's very rare but it's also fatal.I'm just not happy to take it at the moment.Having said that,it's good to hear it has worked for someone.
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Date: 31.01.2012
From: Liane

Subject: Re: Rituximab

In all honesty, I didn't know about PML until I Googled it just now. Even if I had known about it, I still would have gone ahead as my flare up was worse than I'd ever had it before and was so painful I was off work for 6 months and lost a lot of movement in my elbows which is now permenant.

Personally, if there's only a very remote possibility of getting the more serious side effects, I tend to not dwell on them. Every medication in the world seems to come with a warning of potentially fatal side effects and if I read up on all of them I'd be a nervous wreck. I've a great rheumatology team and I fully trust their judgement.

The infusion itself I find okay. They give you some paracetamol before pumping some sort of steriod through you then they switch the bag to the rituximab solution. Is quite long winded as you'll be there from about 9 til 4 and they keep supplying you with tea which results in you asking to be unhooked seemingly every five minutes to nip to the loo!

My fiance usually comes with me to ease the boredom and we take a range of board games and quiz books. - the staff rather enjoy it too!

Was that any help?

Rhona: I tried Enbrel and it seemed to work well (the only anti-TNF for me that did). I only came off of it because I had some localised reactions around the injection site. They were very minor so don't let it worry you before you try it.
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Date: 01.02.2012
From: rhona

Subject: Re: Rituximab

You are right in saying that all medications have side effects Liane. i had to stop anti-inflammatorys as my feet got so swollen. i have been on the enbrel for 4 weeks now and still waiting on it kicking in. I just hope it works soon. stay well. x
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Date: 01.02.2012
From: Liane

Subject: Re: Rituximab

Good luck with the Enbrel. I really hope it works for you! :c)
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Date: 31.05.2012
From: rhona

Subject: Re: Rituximab

Hi Liane & anyone else on rituximab. Just to let you know that i am starting rituximab next week. I was on enbrel for almost 4 months but it didn't help at all. I am so hoping this helps me as I feel so bad at the moment, i will let you all know how i get on with it. I was very concerned about the brain disease but i have been told they don't think anyone in Britain has suffered from it. Hope you are still doing well on it Liane. xx
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