Living With MS

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

Wednesday, April 14, 2010




Hi everyone, I completed my 46th Tysabri infusion yesterday. I wish I could say it went without a hitch, but after being stuck three times with a needle to get an open line-I was left bruised and battered. I now have three different bruises on my arm, two the size of thumbnail prints on my left arm and one bruise the size of a softball on my right arm which is really hurting today, but at least I got my Tysabri yesterday.

I have been discussing Tysabri with a current Tysabri patient and she asked me the following questions via an e-mail. I need to go rest my arm now as it is starting to hurt again, take care everyone-Lauren

Subj: Re: Tysabri
Date: 4/14/2010 12:51:29 PM Pacific Daylight Time
From: LGLBGL2003@aol.com
To:
Sent from the Internet (Details)


Hi again XXX,

It respond to your questions:


In a message dated 4/13/2010 11:10:13 PM Pacific Daylight Time, XXX@aol.com writes:

I wanted to ask you...
have you heard whether or not they have a test.. blood test??? to determine whether or not we are positive for the JC Virus??? cuz after being on Ty for over 2 years or so I know "they" are somewhat more concerned about the possibilities for the dreaded... PML
my doc said he thought it was developed and available but he was not sure what to actually "order" so I could be tested...
also how do you feel about "drug hoidays" from tysabri...
I do not want to take a drug hoiday... I want to continue taking it with no break...
How do you feel about this???

Yes, there is a blood test available to check for the JC virus, but I am unsure whether or not it is available to the general public or whether or not it is only available through a trial where it is being tested..., I am also unsure whether or not the test is for a dormant version of the JC virus you may or may not be carrying or an activated version of the JC virus-your neurologist needs to call Biogen himself & request further information as to what he needs to " order" for you. I'm sorry I don't have the exact information you need, but your neurologist needs to get this information directly from Biogen.

As to "drug holidays" my neurologist does not believe in them because there is no scientific data supporting drug holidays. In fact, the Tysabri label states at the end of page 6 & the beginning of page 7:

"Experience with monoclonal antibodies, including TYSABRI, suggests that patients who receive therapeutic monoclonal antibodies after an extended period without treatment may be at higher risk of hypersensitivity reactions than patients who received regularly scheduled treatment. Given that patients with persistent antibodies to TYSABRI experience reduced efficacy, and that hypersensitivity reactions are more common in such patients, consideration should be given to testing for the presence of antibodies in patients who wish to recommence therapy following a dose interruption. Following a period of dose interruption, patients testing negative for antibodies prior to re-dosing have a risk of antibody development with re-treatment that is similar to TYSABRI naïve patients".

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/includes/redirect.xml&resource=/en_US/tysb/site/pdfs/TYSABRI-pi.pdf ..., in other words, my neurologist is not willing to put me at a higher risk for developing hypersensitivity reactions, antibodies to Tysabri, and then experience a reduced efficacy of the medication should I interrupt my dosing schedule and then recommence my Tysabri therapy.

I just completed my 46th Tysabri infusion yesterday, have been on this medication for more than three years, and both my neurologist and myself are quite pleased that I have not had a relapse nor any new active lesions for more than three years, so neither one of us plan on stopping Tysabri for a so-called "drug holiday".

Hope this information is of some help to you. Take care dearheart--

Lauren :)

0 Comments:

Post a Comment

Links to this post:

Create a Link

<< Home