Living With MS

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

Saturday, January 02, 2010


Happy new year everyone..., here is a post from a Tysabri patient on a very popular private MS board (she is upset that her doctors wants to take her off Tysabri and place her on Copaxone-which are daily shots-including IVIG treatments), and my reply for everyone to see on that MS board..., hopefully we will have a healthy, happy and prosperous 2010, at least that is my prayer -- all my very best to each of you..., Lauren

... I need some support, U are going to have to go through this email and fix it allittle my spelling and gramer is really bad right now..... Sorry.... Asking if any one knows about being more at risk for PML in the 2 year mark of of taken tysabri? My Dr.s want to take me off of tysabri and Put me on Copaxone and IVIG... The TY has been working great and Ive been soo healthy... I really dont want to change my meds... but I dont want to GEt PML.... Copaxone I hate the shots everyday I was on Rebif and that was sooo hard for me.... Damn I wish this Crazy MS would leave us all alone!!! I need some Prayers.. Im soo scared.... lots of love ... XXX


Here was my reply to this patient:


Hi XXX,


I have been on Tysabri for more than three years, just completing my 42nd infusion two weeks ago.

Your doctors are quite possibly putting you at more risk for having further relapses, disabilities, and what's worse-IVIG treatments could drastically reduce the efficiency of your immune system (i.e., eventually dropping it really, really low)-placing you at very high risk for not only developing PML, but also IRIS (immune reconstitution inflammatory syndrome) should you develop PML.

A very simple blood test called the CD4/CD8 PCR tests can be done to measure the competency of your immune system--they are done all the time.

What I don't understand is why neurologists are willing to not only place their patients at risk for having further relapses, further disabilities, allowing disease progression, reducing their patients' Quality of Life by withholding Tysabri from them, placing their patients on one of the lesser effective ABCRs (Copaxone is only 27% effective at preventing further relapses and possibly slowing the disease process down-plus the patient really is not protected for at least six months-the time it takes for Copaxone to start working in the body), and if these neurologists are eventually going to put their patients back on Tysabri after a "drug holiday", they are not only placing their patients at risk for developing hypersensitivity reactions to Tysabri, developing antibodies to Tysabri, but for Tysabri to possibly have lesser efficacy once they are back on Tysabri. Why don't they read the label in full???

Lastly, why are patients allowing their doctors to do this to them??? .., doctors work for us, it's not the other way around. This makes me so sad to hear that XXX's doctors are contemplating doing this to her--if they were doing this to me, I would not only raise bloody h**, make a scene so all their other patients could see how awful they are/will be treated, then I'd find a new doctor that has more brains & ba**s to stay better informed when it comes to "selective adhesion molecule" therapy, which is what Tysabri is.

Lauren

5 Comments:

  • At 3:32 PM, Blogger Tricia said…

    thanks for posting this Lauren, we asked my husband's doctor about staying on Tysabri as he has been on for 2 years. His doctor's reply was that yes there was a slight increase in the chance of PML after 2 years BUT that it was still very low. He said Pete would be more statistically likely to have a bad car accident on his way to treatment that to develop PML.

    So he's staying on it, starting his 3rd year on Tysabri next week.

    Doctor also felt that a drug holiday put him at higher risk for disabling exacerbation which he probably would not recover from.

     
  • At 4:08 PM, Blogger Herrad said…

    Hi Lauren,
    Please visit my blog and pick up your award.
    Best wishes for this New Year.
    Love,
    Herrad

     
  • At 1:32 PM, Anonymous Anonymous said…

    Actually the National Institutes of Health argues that the CD4/CD8 PCR test does not help in terms of determining who is at risk for PML. I conferred with my neurologist and research nurse (who ran one of the first Tysabri clinical trials) They are at a top 10 medical school and both also agreed the test is not helpful one bit.

    Sorry for the disappointing news. All we can do is hope Biogen comes out with the JC Virus antibody test very soon--Biogen is saying this year.

     
  • At 3:36 PM, Blogger Lauren said…

    To anonymous:

    How interesting that you do not provide a link for your "expert information". I beg to differ with your opinion, and the opinions of your so called "top 10" medical school graduates.

    Your argument is with the expert authors of the New England Journal of Medicine which state in part specifically with regard to the CD4/CD8 PCR test that:

    "...Presumably, the immunosuppression caused...allows for the expansion of virally transformed cells..., in addition- once an antibody is produced against a specific antigen, the next time that antigen enters the body, the immune system "remembers" its response. In that way, checking for the presence of specific immunoglobulins can be helpful in diagnosing or ruling out certain illnesses.

    Doctors also rely on the immunoglobulin test as one of the tools to help diagnose immunodeficiencies (when the immune system isn't working properly). A person can be born with an immunodeficiency or acquire it through infection, disease, malnutrition, burns, or as a side effect of medications.

    Immunoglobulin levels are also used as part of an evaluation for autoimmune conditions such as rheumatoid arthritis, lupus, and celiac disease.

    If you want to learn more about these tests, you can visit:

    http://kidshealth.org/parent/system/medical /test_immunoglobulins.html

    So once again, your disagreement is not with me, it is with the experts that authored the papers published in links above.

    Lauren

     
  • At 12:10 AM, Anonymous Anonymous said…

    Yes, I am disagreeing with the New England Journal of Medicine's report based on my consult with several neurologists. My understanding is that you supported testing for low CD4 and CD8 cell counts. Perhaps I am wrong?

    I did not want to identify the medical school I receive treatment at. I value my privacy as I work in a public position in academia. Out of respect for my doctors I don't post their names either. Once again I am posting this from a cellphone and do not have the links handy to paste. I wrongly assumed that you and the readers would go online in search of this info. But I promise to come back and give them.

    I'm on Tysabri too, just like you. I love the drug. But I want all of the information to be available so people can make an informed decision about taking it. Consumers should learn what we actually know and don't know about predicting and preventing PML

     

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