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1st dose of Tysabri

Hi all,
Got my first infusion today.  Despite all the warnings and scary patient information, it went well.  Not one side effect yet.  The most annoying thing is that time moves slowly, and a 2 hour infusion is boring as all get out.

The nurses at the Infusion Center are very impressed with the med.  One patient in particular was in a wheel chair and improved enough after 18 months to go back to work as a carpenter.  It gave me hope because not only does it have a high percentage rate for stopping relapses, but maybe it helps with the inflammation and improves mobility.  Only time will tell.

I am very encouraged.
Sally

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Avatar universal
Thanks for the excellent info.  In addition, my Neuro said the majority of PML cases were in Europe where the "Touch" program is not used to follow patients.  She also said that usually another DMD was being used concurrently with the Tysabri and that further lowers the body's immunity.  There are a couple of deaths related to  liver problems, however, I read those patients were alcoholics, so there was already an ongoing health issue.  I am sure there will be more and more treatment for the PML as time goes by.

Blessings,
Sally
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Avatar universal
I sent you both messages about this. I have been following TY news since it came on the horizon for me. I do have quite a bit of info on it. Do you know that in development and scheduled to be released this year it has been published that a simple blood test to determine if  & when PML has happened so treatment can begin early.

Plasmorephis, blood filtering is already standard treatment to get Tysabri out of the body quickly if PML happens. I saw that a trial had been registered with the US FDA in clinicaltrials.gov when Tysabri was returned to market a trial was registered for Plasmorephis blood filtering to remove Trysabri from the body quickly whren it needed to be removed quickly. I was proud of myself for noticing when that trial was registed with the gov & watched it's successful completion. So I knew about it before it made the news.


A malaria drug in the lab has shown promise at treating PML, the results should also be released by the end of the year. When Tysabri was pulled from the market, in 2005 the PML risk was 1 in 1000. Since it has been returned to market to  used as a monotherapy, without Avonnex the risk if PML is 1 in 9000.

The oral drugs that are in the pipeline also carry the risk of PML. To me that means there are a lot of $ riding on being able to treat PML when & if it happens. I'm 45 one thing in Life that is consistently true, when there is a lot of $ riding on anything, problems get solved.
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Avatar universal
Hi, Could you please keep us posted. This may be my next step and i am very uptight about taking Tyabbri.  I would really appreciate your knowledge.

Linda
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Avatar universal
Next month will be my 8th infusion. It does take about 6 months to get the full effects of Tysabri. I was very concerned about PML & have followed it much. The earliest PML happened was at 8 months for a person using it for Crohns, before it was pulled from the market in 2005. The latest case was after 26 infusions in 2008.

I thought I will just start it & not worry about it until I get to that 8 month and decide then.

Well I'm at the 8 month  and it's a pretty easy decision to make, I will continue Tysabri. When I started Tysabri I volunteered to be contacted about my opinion of Ty at 3,8 & 16 months. She just called me to ask of my experience & opinions now.
I said I'm not like I was before MS, but I am stable & I can make plans for the summer. Every spring there has been something MS happening that I had to adjust to for the summer. But now I am the same, so I think I need to make plans for the summer. It will be easier to do because I am the same. That's after 7 infusions I'm sure it will be better at 16 infusions when she calls again.
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572651 tn?1530999357
Hi Sally,
Here's to much success on the tysabri - please keep us posted as to how the treatments progress, ok?

stay encouraged,
Lulu
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