Self administation is not prmitted and the infusion has to be done at a hospital, and the patient does not get to see the preparation. There have been two more cases of progressive multifocal leukoencephalopathy (PML) amongst Tysabri patients. reported August 1st.
They were both on no other drug, and it is a usually fatal infection of the brain.
Hi - it is usually fatal in HIV patients, that is all - because HIV patients have no immune systems.
But in MS and Crohns, if it is diagnosed in reasonable time, then it should not be fatal or perhaps not even have any long-term consequences. It is a virus that we naturally already carry (it is not contracted from Tysabri !!), and the body has normal defences which a plasma exchange can restore.
Actually one of the new PML cases is walking around at home ! You can google to check this.
Let's be clear about Tysabri and PML. First - I just had my 7th infusion of Tysabri last week. PML is something you DO NOT want to get. This is why Tysabri is likely the most regulated drug in the US. PML is bad in any case - trick is to catch it very early and that is why the FDA insisted on the TOUCH program in the US restricting restricting doctors and infusion centers to a protocol that includes the FDA and drug maker for continued approval. Go to Tysabri web site for info.
I just think the biggest problem is the disease(s) that we have for 100.00% certain, rather than the diseases that we have a 0.10% or 0.01% chance of contracting.
I mean to say, I have Crohn's, and the regulators gave Tysabri a very difficult time before approving it. And do they know how many Crohn's patients die of - well, Crohn's, every year ?
And may I ask how are you doing after your 7 infusions ? Do you have stability, or even better ?
Hey then I am glad to hear that! Hope they did not make you lose any time from the infusion schedule. Looking forward to seeing maybe a video of a Tysabri infusion.
Hey I see on your home-page that your previous employer and the insurance company have cheated you out of your Tysabri ! Hope you get it all resolved !
Hi, would it be possible to make a video showing the preparation for the Ty infusion ?
I don't know if you have a portable camcorder.
Thanks
Steve
7mumfred7 3 years ago
Self administation is not prmitted and the infusion has to be done at a hospital, and the patient does not get to see the preparation. There have been two more cases of progressive multifocal leukoencephalopathy (PML) amongst Tysabri patients. reported August 1st.
They were both on no other drug, and it is a usually fatal infection of the brain.
villagodzilla 3 years ago
Hi - it is usually fatal in HIV patients, that is all - because HIV patients have no immune systems.
But in MS and Crohns, if it is diagnosed in reasonable time, then it should not be fatal or perhaps not even have any long-term consequences. It is a virus that we naturally already carry (it is not contracted from Tysabri !!), and the body has normal defences which a plasma exchange can restore.
Actually one of the new PML cases is walking around at home ! You can google to check this.
7mumfred7 3 years ago
Let's be clear about Tysabri and PML. First - I just had my 7th infusion of Tysabri last week. PML is something you DO NOT want to get. This is why Tysabri is likely the most regulated drug in the US. PML is bad in any case - trick is to catch it very early and that is why the FDA insisted on the TOUCH program in the US restricting restricting doctors and infusion centers to a protocol that includes the FDA and drug maker for continued approval. Go to Tysabri web site for info.
viddj 3 years ago
I just think the biggest problem is the disease(s) that we have for 100.00% certain, rather than the diseases that we have a 0.10% or 0.01% chance of contracting.
I mean to say, I have Crohn's, and the regulators gave Tysabri a very difficult time before approving it. And do they know how many Crohn's patients die of - well, Crohn's, every year ?
And may I ask how are you doing after your 7 infusions ? Do you have stability, or even better ?
Good Luck with it !
7mumfred7 3 years ago
It was corrected and Thank you!
qualisarx 3 years ago
Hey then I am glad to hear that! Hope they did not make you lose any time from the infusion schedule. Looking forward to seeing maybe a video of a Tysabri infusion.
7mumfred7 3 years ago
Hey I see on your home-page that your previous employer and the insurance company have cheated you out of your Tysabri ! Hope you get it all resolved !
7mumfred7 3 years ago