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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010 Posts: 153 Location: Kent
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Morning Everyone I saw my Rheumy nurse yesterday and the decision has been made to stop Cimzia as that seems to now be failing and to try Rituximab, would love to hear from anyone who is also on this? Thank you Lou xx I love people who can make you smile even when you do not feel like smiling. x
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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010 Posts: 153 Location: Kent
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Oh blimey now I'm worrying I love people who can make you smile even when you do not feel like smiling. x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Louise, Sorry I can`t help with the rituximab - not been on that one yet. There are some folks on the forum who are or have been on RTX, but they don`t seem to be looking in at the moment. Hope someone picks up on this for you, and also that it works well when you start it. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Louise - sorry that you've not any replies from people taking RTX - I'm just on MTX so can't offer much I'm afraid. Perhaps it's a good sign that the folks who are on RTX aren't visiting the forum as often because they are feeling so well they are off enjoying their life! Just my thought, so I hope you're not too worried - and very good luck when you start it! Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Lou, I tried rtx this time last year. Not too successful for me I'm afraid. It seemed to help a bit but not enough to make that much difference. There are a couple of blogs about it on here but not too successful either, however when I was having my first infusion of it , there was a lady there who had a great deal of success with it. Seems to be just a case of giving these things a try! The initial 2 infusions do seem to be a bit of a big deal, but I had not side effects at all and you are extremely well monitored. Good luck with it Zena x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 154
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Hi Louise
Sorry you haven't had much response to your post. I have only just seen it.
I am on Rituximab and doing very well indeed on it. I had my third round in August and each time it is more effective. I haven't had any side effects to speak of, just feeling a bit odd around the time of the infusions, but you are monitored very closely while having them and given good care.
I like only having infusions every 6 months, in fact between the second and third round I went 10 months for various reasons.
I will add that i have had RA for 40 years and been through many drug treatments includng Infliximab and Enbrel and had lots of surgeries as the RA has done a lot of damage. But my consultant is very pleased that I have responded so well and it is good to have inflammation markers in two figures instead of three after many years.
So I hope I may have put your mind at rest a little. I'm surprised there havent been more replies but maybe it is that people are doing well on this drug so dont come on much? I know of quite a few others besides myself who are doing well on Rituximab. The risks are pretty much the same as any anti-TNF drug.
Good luck and let us know how you get on, Takecare Lizxx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Lou
This time last year I had 2 infusions of RTX but same as Zena it did not make the difference I had hoped for. I have a blog on my time under 'blogs', take a read. You are extremely well monitored. Also there are a lot of people who do really well on RTX so fingers crossed for you. Good luck
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Louise
Can't really comment on it because I've not been on it but I understand how you are feeling. I am about to start anti tnf's and am trying to gain as much information about it that I can. Hope Annamaria's post helped. It really is a such a mine field isn't it starting a new drug and wondering what will happen?
Good Luck with it.....hope it does 'The Magic'
Paula
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Rank: Newbie
Groups: Registered
Joined: 3/9/2012 Posts: 6
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Hi
I am on ritux and have been since October last year - 2 infusions 2 weeks apart. I had been on inflix which was successful - but had to stop since it caused psorisis. the ritux did not work initially, so I needed steroids, as symptoms returned. After I had the 2nd set of infusions May this year- it did kick in and have not yet needed another dose, but expect that I will need the next round fairly soon. I would say if it doesn't work straight away don't give up, but be guided by your medic team.
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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010 Posts: 153 Location: Kent
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Hi All Thank you for your replies. I haven't had a date to start yet, hope its soon very down and fed up of it all. So tired all the time as well javascript:insertsmiley('  %20','/members/forum/YAF/images/emoticons/msp_sad.gif') My GP has signed me off until the 6th of December so I hope i get started on this drug soon. Take Care Love Lou x I love people who can make you smile even when you do not feel like smiling. x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Louise I am about to start RTX I have failed on Humira and this is my next one apparently!! I am seeing my rheumy nurse next Tuesday to discuss beginning treatment, I intend to put it off til after Christmas as I child mind, and the two full time little boys are moving away so I will have 3 days a week to myself (for a while anyway) and I'd rather wait. I hate all these drugs, but what can we do??? Please keep posting and let us know when you start and how it goes BARBARA
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Rank: Newbie
Groups: Registered
Joined: 6/28/2010 Posts: 3
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Hello Louise. I have been on Rituximab for the last 5 years and I am about to have my 6th lot. It's the best thing I have ever had and once it kicks in I am really well, the pain and stiffness and fatigue goes! I don't need a stick nor the wheelchair. It takes up to 3 months to start working though. The first time, I was quite ill before having it and still had to take other tablets and steroids. I am no longer on steroids . I have been having it every 9 months or so. You also have to take a small dose of Mtx weekly. I failed on all 3 anti t.n.fs. being allergic to 2 of them. I must admit I am always a bit worried when I first have it because of side affects. (I read too much on the internet about them!) I have had RA for 20 years. Hope you find this helpful. Good Luck. Louise.
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