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Biologicals Options
Mandy-KK
#1 Posted : Monday, September 06, 2010 4:27:03 PM Quote
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This is my first time posting a topic on this forum but I know I will get good feedback - so here goes...

Have been on MTX (Methotrexate) and Humira but have been taken off it as it didn't work for me. Currently offered either Rituximab or Tucilizumab. Does anyone have experience of either of these drugs. I am exceptionally lucky in that my Rheumatology team are fantastic and I have the offer of whichever I choose.
Hoping to hear from anyone with their experiences of these drugs.

Thanks
Mandy
Rose-B
#2 Posted : Monday, September 06, 2010 4:43:05 PM Quote
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Joined: 4/20/2010
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Welcome Mandy

Sorry I do not have any knowledge of the drugs you mention

However I know someone will - keep posting we are a friendly bunch.

Rose
Kathleen_C
#3 Posted : Monday, September 06, 2010 5:00:21 PM Quote
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Joined: 12/3/2009
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Location: Durham
Hello and welcome, Mandy.

Sorry, I have no experience of the drugs you are asking about - I`m on humira, over 3 years now - but there will be someone here who can advise.

Take care,

Kathleen x

LynW
#4 Posted : Monday, September 06, 2010 9:30:51 PM Quote
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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Mandy

Welcome to the forum. Sorry to hear that the Humira/Mtx combination hasn't worked, but it is great that your rheumatology team have offered alternatives. There are so many drugs available now there is sure to be something that will work for you!

I'm afraid I can't offer any thoughts on these two drugs; I'm currently on Enbrel, Naproxen and Prednisolone (MTX bit the dust a few months ago!). I'm sure someone here is on Rituximab, can't think who though! Here is a link to the NRAS page about the drug and here is the link for Tocilizumab. There's lots of information about the different drugs and a booklet specifically about the Biologics.

Sorry I can't give you any personal experiences on these. Good luck and keep posting!

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Sheila-R
#5 Posted : Monday, September 06, 2010 10:57:19 PM Quote
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Joined: 1/29/2010
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Hi Mandy,
Welcome to the forum.
Yes I also failed on Humira and then had Enbrel, that also didn't work. I was then offered Rituximab and had my first round last February, that also didn't work, however apparently research has shown that a second round of it can help and I had the first dose of that second round last week. It still takes up to 3 months to work so watch this space and I'll let you know if the second round has been effective.
I've also been told that if this round doesn't work I can try Tocilizumab in the future. At the time of my last appointment Tocilizumab hadn't quite been given the go ahead by 'nice'
I was fine with the infusions for the Rituximab and had no bad reactions. They probably explained the procedure to you as it means going in as a day case patient for a day.
Sorry I don't yet have any experience of Tocilizumab.
The only thing I would check is that if you decide to have the Tocilizumab and it doesn't work, would you then be allowed to try the Rituximab? It might be work checking the 'nice' guidleines as you don't want to put yourself in the situation that by having one drug you rule out the other.
I understand that many people have had success with Rituximab so don't go by my experience.
I'm heartened by the fact that there are other drugs out there to try when one fails, its this that keeps me sane and hopeful that I may one day be both mobile and steroid free, as currently its seems to be a I can have one but not the other.
I really hope that which ever you choose, the treatment can start soon so that you begin to feel the benefit.
With all best wishes
Sheila
Sally B
#6 Posted : Thursday, September 09, 2010 10:24:54 PM Quote
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Joined: 7/10/2010
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Location: Little Dewchurch, Hereford
Hi Mandy! I'm startin Rituximab tomorrow after having failed recetnly on Humira - I started it 18 months ago & it helped quite a bit at first though never completely. I'm sero-neg & only got a diagnosis via USS having been on sulfasalazine for a while on the max dose while they wondered what I'd got. (MTX plus hydroxycholoroquine were added after my diagnosis , but they stoppe the sulfasalazine & hydroxychloroquine when I started Humira.
I was offered a choice between Rituximab - the Consultant's recommendation at first before he remembered I'm seroneg as I've got a troublesome large nodule at the base of my right index finger - & going back down to Leflunomide ie no biological treatment. Have gone for the Rituximab anyway (already have high BP on treatment for nearly 15 years so thought I'd better give that a miss) Will keep you posted! (Don't know anyone on Tocilzumab)
Hope your second round works better!
Love Sally
louise-p
#7 Posted : Saturday, September 18, 2010 7:25:36 PM Quote
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Joined: 6/28/2010
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Hello , it's not very often I get onto the forum and you may already have some more information from people who have had Rituximab - looking at the date of the last posting! I would just like to tell you my experience of Rituximab after failing on all 3 anti-tnf's-being allergic to 2 of them. I have had Rituximab for 3 years running, 2 sessions, 2 weeks apart. It's been marvellous for me and I don't know what I would have done without it as I was in so much agony and could barely walk. The only side affects I suffered were heart racing and "funny heads" which wear off after a couple of months. The Ritux takes up to 3 months to work and then I get relief from the horrid RA for 6-7 months. I do hope it works for you. Best wishes. Louise.Smile p.s. Have had RA for 17 years.
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