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Tocizulimab Options
davannh
#1 Posted : Tuesday, March 22, 2011 11:12:13 AM Quote
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Hi

It is ages since I posted on this forum, although I do visit it regularly.

We have had a very busy time during the last year, moving house etc.

Last January (2010) I started Tocizulimab. I have various health conditions and had very high levels of inflammation. (CRP 200+)

It has been an amazing drug and has helped with the fatigue from RA and the pain was far less for a while. I was still not very mobile as I have had RA for over 30 years and have a lot of joint damage. Over the last two weeks the pain and swelling has increased considerably although my blood results show that the drug is still suppressing my inflammation levels.

Has anyone else had any experience with this drug (I know jenni had a bad reaction)

davannh


Sheila-R
#2 Posted : Wednesday, March 23, 2011 10:28:11 PM Quote
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Hi Davannh,
Sorry no experince of this drug, though I did have some discussions with the consultant about it recently.
I'm interested as to how you were able to have it as my consultant said it was only available if I was intolerant of Rituximab, but since I can tolerate that okay then it doesn't appear at the moment that I can have it.
Sorry to ask questions rather than give a helpful reply.
Hoping your pain and swelling has now improved?
Best wishes
Sheila
LynW
#3 Posted : Thursday, March 24, 2011 8:58:05 AM Quote
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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi!

I wondered about this drug in preference to Rituximab so was very interested to read your post, and especially as you, like me, have had RA for eons and have joint damage!

As I understand it Tocilizumab will only be considered if you have already tried at least one disease-modifying anti-rheumatic drug (DMARD) such as Methotrexate or Sulfasalazine, and/or biological therapies such as Enbrel or Rituximab. So it seems you do possibly need to go down the Rituximab route first.

It appears to work in a very different way to other drugs by blocking the interleukin-6 receptor (IL-6R). In people with RA a protein called IL-6 is overproduced in the body, causing inflammation and damage to bones, cartilage and tissue. Tocilizumab blocks the action of IL-6 and so can reduce this inflammation and damage. It certainly seems to have worked for you, which is brilliant news!

Do you suppose the recent pain and swelling may be a temporary flare perhaps not yet registered by the blood tests? I know ESR can be very slow to respond to changes. Hope you start to feel better very soon and the Tocilizumab continues to work well for you ThumpUp

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

Rose-B
#4 Posted : Thursday, March 24, 2011 12:40:47 PM Quote
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Joined: 4/20/2010
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Location: Somerset


Hello,

Nice to be in touch with the Forum again. Sorry no knowledge about this drug
but so pleased for you that you are free from pain and it is working for you.

I hope the flare is just a blip for you and long may it continue ThumpUp


Rose
davannh
#5 Posted : Thursday, March 24, 2011 4:14:53 PM Quote
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Hi

Thank you for your kind replies.

I have tried all the available Dmards. Also two anti-tnf's and Rituximab, Tocizulimab this has been the best.
It worries me that I have suddenly started to deteriorate and also that my blood tests have not reflected it.

Perhaps the consultant will be able to comment.

Thanks anyway
davannh




jenni_b
#6 Posted : Thursday, March 24, 2011 6:34:49 PM Quote
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Location: nr Southampton
I did have a bad experience- but I was allergic to the drug which really could happen to any medication.

There are 2 people I have met since who are going great guns on the Toxi loxi! You make 3! These meds, when they go right really do give you your life back!

Incredible stuff.

Jenni xx

how to be a velvet bulldoser
Wolf52
#7 Posted : Thursday, April 14, 2011 7:26:41 PM Quote
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Location: Wolverhampton
My consultant wants me to try this one next - have failed mtx, leflunomide, humira and rituximab. I know I haven't been suffering for as long as some members, but the consultant is treating the RA with aggression.

Have yet to discuss all with biologys nurse - will keep you updated.

Nina x
LynW
#8 Posted : Friday, April 15, 2011 12:56:59 AM Quote
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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Nina

Sorry to hear that the Rituximab has not worked out for you; it's looking like it might be my next option. Fingers crossed that you get Tocilizumab and it works well for you ThumpUp

Good to see you posting Nina Smile

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

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