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