Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Tuesday, July 03, 2007



My Tysabri Diary...Yes, Yes, Yes!

 Oh yeah!!! NICE (The National Institute for Health and Clinical Excellence) reversed itself and is allowing Tysabri for HARRMS (Highly Active Relapsing Remitting MS) which apparently covers about 3,000-7,000 MS patients in the UK (as has been reported).... Tysabri is the only DMD approved by NICE to be recommended for reimbursement by the NHS - wooohooo!

The RES group (rapidly evolving severe RRMS) falls into this category defined as:

1) patients with two or more disabling relapses in 1 year, and with one or more gadolinium-enhancing lesions or a significant increase in T2 lesion load on brain magnetic resonance imaging [MRI] compared with a previous MRI.

•**apparently this does not include the sub-optimal group which are defined as patients with high disease activity (defined as at least one relapse in the previous year while on therapy and either at least nine T2-hyperintense lesions or at least one gadolinium-enhancing lesion on brain MRI), despite treatment with an interferon beta (IFN-beta) drug (sub-optimal therapy).

I guess that NICE feels the sub-optimal group needs to continue treatment with interferon first, and the interferons aren't even reimburseable under the NHS...go figure.

This is my opinion only: So if the sub-optimal group is not covered, it is not a stretch to see a patient from this group becoming an RES group patient - either through:

a) by qualification, as "1 relapse in previous year" is not too far from "2 or more relapses in previous year"

b) by the doctor's diagnosis of what the patient is saying (think about it).

Where there's a will there's a way, and where there's a need there is a will! ;)

Congratulations to our UK MS friends in England and Wales! I [we] sure hope that you can benefit from the superior efficacy of Tysabri, and that you enjoy a better Quality of Life!

http://guidance.nice.org.uk/download.aspx?o=419024

Easier article to understand: TYSABRI(R) Recommended by NICE for Use in Highly Active Relapsing Remitting Multiple Sclerosis in the Final Appraisal Determination http://www.elan.com/News/full.asp?ID=1022211

Here is a quote from one of England's Professors/doctors: "This decision offers people with highly active relapsing remitting multiple sclerosis hope of regaining control of their disease," commented Professor Gavin Giovannoni, The Royal London Hospital. "TYSABRI represents a significant advance in MS treatment, offering real hope of delaying the progression of disability and reducing the frequency of relapses."

So I wonder, with this new positive reversal of NICE's original negative decision, will it impact the SMC's (Scot's) previous denial which is coming up for review in August 2007??? And will it also affect Australia's approval under their PBS coming up around November 2007???

I just truly believe there is hope in Tysabri for suffering MS patients all around the world! Wooohooohooo!

(((hugs)))

Love, Lauren :D

A very proud member of www.MSpatientsforchoice.org

5 Comments:

  • At 5:30 AM, Anonymous Anonymous said…

    Hello Lauren,

    I am sorry to tell you this, but in Denmark treatments with Tysabri has shown by certain people, that there are side-effects after all :-(

    And maybe I am one of them..it was my last hope at the moment.
    But I hope not..and that you can continue with the good results.

    Sorry my english :-)

    KR
    Ann Lauridsen, Denmark

     
  • At 11:18 AM, Blogger Lauren said…

    Hi KR!

    I'm so sorry to hear that you're having side effects with Tysabri...

    Quick question though: the side effects that you've been having, are they hypersensitivity reactions (allergic reactions) at the time of your infusions? If so, are you being pretreated (30 mintes prior to your infusion with an anti-allergic medication) such as Benadryl or Claritin?

    Please let me know KR..., you can write me at LGLBGL2003@AOL.COM, and you can use Babel Fish which will help you translate whatever you type in your language - it converts it into English :) The Babel Fish program (which is free) can be found at: http://babelfish.altavista.com/

    I hope to hear from you soon KR!

    Lauren

     
  • At 4:58 AM, Anonymous Ann said…

    I have sent an e-mail to you.

    Kind regards from

    Ann

     
  • At 12:28 PM, Blogger Merelyme said…

    i have been hearing so much about tysabri lately. i am hoping that the next advancement will be an oral medication. and of course a cure would be nice too. i think the medical research is progressing in the right direction.

     
  • At 8:47 PM, Blogger Penny_Ann said…

    [QUOTED]:"...apparently this does not include the sub-optimal group which are defined as patients with high disease activity (defined as at least one relapse in the previous year while on therapy and either at least nine T2-hyperintense lesions or at least one gadolinium-enhancing lesion on brain MRI), despite treatment with an interferon beta (IFN-beta) drug (sub-optimal therapy)."

    On brain MRI? What about those of us whose lesions are in the spinal cord?

     

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