Yeah, I don't know what is up with the veins. It must be the nurse?? (Wiz you are probably right). At the old infusion clinic with the incompetent nurse I have to give him credit for only one thing -- I got 12 infusions there and he got the IV in on the first try every time!

RW: I did drink lots of water the past 2 times but I'm not sure how much of a difference it made. Maybe I need to drink the night before? I hear you on drinking lots of water. Several years ago I used to not drink that much water. I went out to lunch with a friend in Calif. and he noticed I drank no water at all and lectured me on staying hydrated in the heat!! Since then I make a conscious effort to drink a lot. Every infusion I bring a half liter bottle of water.

Polar: Sorry for the vein problems too.

Grammie: I wonder if my veins are rolling? I think this new infusion nurse said that about mine -- she also said the needle just didn't want to go into the vein.

Maryann: I've slowed the infusion down to 2 hours since I was having side effects from the Tysabri - headache, nausea, flu - like stuff.

Does anyone know anything about this? SEC is issuing a subpoena on Elan.

http://www.google.com/hostednews/ap/...0MeXgD9B15QB00

I went for my 31st infusion yesterday and got new RXs to hopefully get me kickstarted into some sort of action. Both are on hold pending Dr approval though, they don't consider the RX written by the Dr approval I guess... Nuvigil (I won't be on the old-vigil anymore if it works :p) also Topamax for the late afternoon headaches. I slept until 12:10 today and didn't really want to get up but my bladder made the decision for me.

The infusion nurse Susan at the Dr's office is hilarious. She's getting her NP license, going to school for it. I told her and the neuro I hope she stays at the neuro's office so she can be my PCP replacement. She was floating on air after I said that and I'm glad. She's so awesome. :) Although she has a bit of a temper and gets riled over somebody else in the office.

My neuro came in later and said if she goes to work somewhere else after she becomes an NP, and works for a doctor who is a "moron" she'll either kill him or quit after two days. :D And I can see that happening too, lol.

The neuro said that spring and fall, with the change of the seasons, are the most common time for flare ups. I didn't consider my overwhelming fatigue to be a flare up but I suppose it is. Of course I didn't call the office about it :o instead just waiting for my infusion day. That frustrates the neuro but if it were something really bad, he knows I would call. (Like vision problems or inability to walk or something.) He knows that I know the signs of PML too and the DH knows what to watch for.

I'll get the new RXs on Monday if they have them ready at our slow pharmacy. I had to go to the slow one because there was a coupon for the Nuvigil for $50 off. :eek:

#31 today!:yahoo:

As usual...no problems, no concerns, in and out the door.

I pumped up my water intake last night, and when the nurse started the infusion she commented on how nice my veins were today!

(of course, I had to use the bathroom twice during the three hours I was there but I have "nice veins"!! ) :p

Hope everyone is doing well!

I wanted Ty in 2006 but the 20% of $3,000 was too much for me.
Now I likely qualy for it and am considering it even more so after reading results here.
Copaxone was great for 3 yrs then numbness/atrophy crept in quick.
Went to Rebif for 4 months and now back on Copaxone. Zero sides from C.
I really want to try Estriol with C but Wyeth and fda need a spanking before that happens.
Glad to hear all the positive effects you's are having with Ty!

So how long do you stay on the TY once you start?
 

I am curious since I am about to embark on the ty journey. I was reading about the newly discovered PML cases and Biogen's proposal that people take drug vacations. But I also read about how most people bounce right back into full swing attack mode when they stop the ty so that would make no sense to me. But once your start the ty is there a long term plan... say we are going to keep you on this treatment for X amount of time and then what? Do you stay on this drug forever?

Biogen has not proposed people take drug vacation because MS disease activity does return soon after stopping.

Suggest we all contact MS Active Source on Monday and state that we will take no more infusions of Tysabri (Threat of stopping is probably enough) until they provide us with more info on the PML cases.

MS Active Source in the US is 1-800-456-2255. Let’s hit them with some serious patient driven pressure.

A jump in PML cases is concerning, but also remember that Biogen/Elan are testing various assays to diagnose PML earlier and risk stratify patients. It’s possible that these PML cases were identified (in this large clump) as a result of testing patients (those in Trials most likely) with these assays possibly before clinical symptoms.

Chris

I spoke to George at Biogen a few days ago and he said it takes about six months for disease activity to resume in what they've seen for people who have stopped Tysabri.

My MS neuro said that we could take a break from Tysabri if we wanted to but that there was no indication that it has any benefit to do so. He said that other neurologists around the country have been suggesting it and if we wanted to, we could, he was just letting us know (those of us in the infusion room).

Two of my infusion roomies have been on Tysabri since the beginning of the Antegren trials, so way longer than me.

I hope that answers your questions too Leggz. I get my 32nd infusion next Friday.