Yay for your good day and good infusion RW. :D :hug: I agree with you about Tysabri. I feel very lucky that I can get it and that it works so well for me too. :)

yeah...so there was another case of PML reported on Biogen's gloom and doom spot today.

US patient, 24 doses.

http://phx.corporate-ir.net/External...R5cGU9Mw==&t=1

No other information is available at this time, but as you know, when more info is available we'll post it here. Keep your eyes open on other MS boards and if you find anything, post it.

The good news?...we are still 30+ cases behind that "other drug" that is used off label to treat MS that has PML associated with it, you know, the one that Biogen also sells along with Genentech, the one that doesn't have any monitoring program so they don't report every freakin' case?

Biogen has also guided that they will continue posting PML cases for Tysabri until July 24, 2009, the third anniversary of the relaunch of Tysabri, when it expects the risk/benefit profile of Tysabri to be clearer.

http://www.nasdaq.com/aspx/stock-mar...bri-ms-patient


Hope everyone is doing well! Have a good Memorial Day weekend!!

It has been quiet in here for a while - and LL, (Love of my Life), and I haven't posted in a while because everything was going so smoothly with Tysabri. We began to take it for granted that this miracle drug was THE solution without any drawbacks.

Until infusion 18.

Having never experienced any major side effects other than some minor facial flushing after the first few infusions, LL had a major reaction 45 minutes into infusion 18 in early April. She went limp, had total body spasticity and was temporarily paralyzed. The Neuro was called into the infusion center, stabbed her with an Epi-pen and then escorted her to the ER at the hospital next door. We spent the night there.

LL's Neuro said that this was the strangest reaction he had ever seen. His practice runs one of the larger infusion centers in the country and it was fortunate that he was present when LL had the reaction.

Follow up consult with the Neuro revealed that she has NOT developed antibodies to Tysabri. Since we all had been so pleased with her amazing response with Tysabri, the Neuro suggested that we try it again with pre medication - and we did - for Infusion number 19.

LL took Benadryl an hour before that infusion. The infusion center nurses administered more Benadryl and a steroid immediately prior to infusion. All went well - with little reaction other than the facial flushing again and (worse than normal) fatigue afterwards.

Her adverse reaction at 18 scared the s**t out of us but we are thrilled that she can continue with TY. Despite this scare and, until we have a cure, we still swear by Tysabri.

JJ

Now that would have scared me off of it for good. :eek: I'm glad it went well with the next infusion and I hope it continues to do so. God bless her! :hug: And you too! :hug:

Yikes!

That would have gotten the attention of everyone involved in my infusion center, along with my neuro and ME!

I'm glad to hear that everything came out well, and that she is able to continue. I hope it continues to go well and that you both will keep us updated on any further adverse reactions so we can watch out for them ourselves.

It's good for all of us to remember that you can have an adverse reaction at any time, even when you have been on a drug for a long time. I still sit quietly and assess my body and it's reaction at each infusion and I don't think infusions will ever become a "matter of fact" thing with me. It took me too long to be where I am and I am always afraid that something will happen to change the excellent results I have had.

Tell LL we're pulling for her!!

I read the last few posts and just wanted to say I'm wishing you all my best. I had #34 last week and know that Ty has given my the QOL I have been enjoying:D
I, also, need to add that I go to 2 other ms sites and really appreciate how neurotalk-ers ;) present info !!
Linda

MS patients report greater treatment satisfaction with Tysabri

http://www.eurekalert.org/pub_releas...-mpr052809.php

"MS patients reported significantly greater satisfaction with the efficacy and convenience of TYSABRI, as compared to MS treatments used previously"

:)...we could have told them that!

I had a blood test today to check for Tysabri antibodies since I've been having some infusion issues. Keep your fingers crossed. I'm sitting here biting my nails. :eek: I don't want to give my Ty. up!! #12 is coming up soon.

Saying a prayer for you, Natalie, that everything comes out FINE!!

Sending up a prayer Natalie... :hug: