Living With MS

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

Wednesday, July 07, 2010




My Tysabri Diary...,
I just posted the following on a very popular MS board:

Congratulation Sean, I was sick every weekend from Avonex, and Copaxone did nothing for me, so I'm glad to be rid of the shots altogether.

I just completed my 49th Tysabri infusion yesterday, so I'm a little tired, and will probably just have a light dinner and turn in for the evening.

SaLe: I'm so sorry that this happened to you, but temps can sometimes do really stupid things such as what happened to you. Just let your husband complain to the infusion Center's administrator and then let it go, because you don't need any additional stress in your life, nor do you want to develop the "reputation of being a difficult patient" at the infusion center. Of course, this is only my opinion from being a certified paralegal for more than 26 years.

To Eagle:

You asked, "- What happens if after I begin the Tysabri, my body begins to produce antibodies to the Tysabri too? "..., if that should happen, your neurologist will probably take you off Tysabri, but to be honest with you, Copaxone is the least effective of the different DMDs (Avonex, Betaseron, Rebif, and Tysabri).

"- Does anyone else have a port to receive the medication through? I was told I might be a good canidate for a port because of all the steroids I have received in the past six months have messed up my veins and I am considered a "hard stick patient."..., I don't have a port, but some people do, and they love it

"- How in the world am I going to be able to afford it? I have just landed my first job. I will be starting in August! I will be a Second Grade Teacher. I will barly be able to pay for my medical bills and the general cost of living. So is Tysabri really as expensive as I am scared it will be?"..., first of all, Tysabri is not expensive-it's less than twice the cost of the different DMDs-it is the infusion which can be expensive-plus,Biogen has different programs to assist patients that cannot afford Tysabri. Once you enroll in the "Touch" program, you should discuss these different programs with your assigned Tysabri Case Manager. Also, if you have "Major Medical" on your insurance policy, the medication and the infusion should be covered 100% under that provision.

"- I am only 22 years old. Do I really want to risk taking a medication that may cause PML?"..., you will only be at risk for developing PML if your immune system drops too low and cannot fight off the "activated" JC virus [which is what causes PML], if you actually carry the dormant JC virus. There are various tests [the ELISA test] which can be run to check the status of your immune system, and there is also a test which can determine whether or not you carry the dormant JC virus, and a test through Eugene Majors' lab at the NIH to determine whether or not you carry the PML virus. There is also plasmapheresis exchange to rapidly remove Tysabri from your system should you carry the PML virus.

But it is always best to discuss these different options with your treating neurologist. I hope that some of this information helps calm your fears.

All my best to everyone here, Lauren Cool

((((hugs to all))))

Love, Lauren :)

3 Comments:

  • At 12:56 AM, Anonymous Terri said…

    Hi Lauren, discovered you & 'Tysabri Diaries' on msrc site the day after I decided to choose Tysabri ... wish I'd found the diaries earlier cos it was a tough decision & the diaries were brilliant & answered all the questions I was asking myself! Anyway - had first infusion a couple of weeks ago & since have seen you on various blogs etc & read your answers/comments AND I thought you'd be the ideal person to ask the following questions ...I didn't realise there was a test to see if you carry the JC virus ... pleeze could you tell me your views on this & how I'd go about finding out about the test before I see my neurologist. Thanx in anticipation Terri

     
  • At 11:13 AM, Blogger Lauren said…

    Hi Terri, thank you so much for your comment...,

    You need to enroll in a study being conducted by Biogen in order to be tested for carrying JC virus antibodies..., if I'm not mistaken, the test is to see whether or not you have been previously exposed to the JC virus (most of us have been exposed to the virus as children), and if you have been exposed previously, your body will carry antibodies to the virus, therefore I believe you need to ask your doctor to speak to Biogen directly in order to enroll in the study.

    I am glad my Tysabri diary and the others have helped you in answering your questions. The MSRC website that posts the various Tysabri diaries is a terrific site.

    Good luck to you in your future Tysabri infusions! I'm sending you all my very best, Lauren :)

     
  • At 12:25 PM, Anonymous Steve Rains said…

    Greetings,

    I am writing to follow-up regarding the survey about your blog that you
    completed approximately six weeks ago. That survey was the first of two
    surveys. I am writing about the second and final survey.

    I greatly appreciate your participation in the initial survey, and hope that you
    will participate in the second (and final) survey. The second survey is shorter
    and should take between 10 and 15 minutes to complete. At the end of the survey
    we explain in detail the goals of the project. The second survey can be found

    at the following link: http://www.surveygizmo.com/s/324062/bloggingii

    If you have any questions about the second survey or the project more generally,
    please let me know.

    Thanks for your consideration.

    Steve Rains

    --
    Steve Rains, Assistant Professor
    Department of Communication
    University of Arizona
    srains@email.arizona.edu

     

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