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Old 11-18-2008, 10:40 PM #721
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I get the usual questions.......The IV is started with a bag of saline, then the pharmacy is called. My infusion center will not call until the saline is started. When the Ty comes it is ran with the saline and the saline runs until the end of the hour observation.................They take my blood pressure unhook me and I'm off for another 4 weeks.........Barb
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Old 11-18-2008, 11:28 PM #722
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So what is the bag of saline supposed to be for? Maybe my pharmacist just mixes the medicine in with a bag of saline and that is what drips for an hour.

I definitely do NOT have 2 different bags. Just the one with the Ty.
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Old 11-19-2008, 05:19 PM #723
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I'll try to get a pic of the setup when I go in December. I wish I had a video cam so I could vid the whole thing and put it on you-tube!

Speaking of you-tube, there are a lot of videos out there now from people on Tysabri. Just type Tysabri into the search and check them out! I think there are a few that show the process the people who are posting them go through when they have their infusion. If you watch them, don't forget to rate them and comment!
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diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
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Found a new neuro 04/07
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Old 11-19-2008, 08:48 PM #724
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They switch me to a bag of saline when the bag of Tysabri is empty. It drips for about 20 minutes or so, usually until the bag is at least half empty. Then they remove the IV and I sit until the hour mark of when the Tysabri bag was empty. Then they do all the usual checks of vitals and check for rashes before I leave.
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Old 11-19-2008, 09:38 PM #725
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I'm just home from my infusion, and I thought I'd let you know how it went!

It was a rough Ty day! Normally, one little poke and the line is in and good to go. The nurse let the first one roll around on her til I told her to stop. Try #2 was a no good, Try #3 was a no go. Try #4 with a little patience finally got her in.

Then she didn't realize they had delivered the medicine, so I was almost an hour before I even started the drip.

I kept the heating pad on me the entire time, even putting it on the line as it went in hoping to keep it warm. My bp was up a little today. Started out temp of 98.1. Midway through 98.3, bp horrible. Did the shakes and stretches at the same five minute mark post med as usual. Stood up about 5 minutes into the shakes, that seems to help slow em down. I probably only had about 15-20 bad minutes instead of 30 this time.

Got a headache this time, so I will pre-medicate next time with the Aleve when I first go in. I haven't had the headaches, or flu-like aches I'm kind of feeling now.

She took my temp again close to the time to go, it was 100.4! So dang it, she took my heating pad away

I went to the bathroom, she took out the iv thingy, took my temp again and it was down to 99.2 so she let me go home.

Now what?

Is the antibody bloodwork hard to get like the Rebif was (special procedure, not really hard)? Or can I just go to my regular blood place if the neuro decides I need it?
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Old 11-22-2008, 08:50 AM #726
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When I go in December I will ask about the test for antibodies. I am not sure if I had it or not. All the tests and bloodwork tend to run together after awhile! I know I have been to the lab every three months since I started, but I don't have the list of tests run on hand.

Hope everyone is feeling well this Saturday a.m. I am huddled in a wool blanket in front of the woodstove waiting for the fire to catch! It's AAAACK snowing out and I am NOT looking forward to going outside to work on the woodpile!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Old 11-22-2008, 01:27 PM #727
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Quote:
Originally Posted by 4boysmom View Post
Is the antibody bloodwork hard to get like the Rebif was (special procedure, not really hard)? Or can I just go to my regular blood place if the neuro decides I need it?
The antibody test is just a blood test, but they send it off to a special lab (I think it's in California?) I had it at about six months or so as a precaution and it turned out negative.

My local clinic made a big deal about having to do the test because they had to ship it Fedex next day on dry ice. You'd think I was asking them to do a heart transplant as an office procedure. Sheesh! Anyway, they said if I need it again I have to have it done at the local hospital.

Sorry about the infusion mishaps, I hope next time is better.
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Old 11-28-2008, 08:01 PM #728
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What could Anthem Blue Cross be thinking?

Profit, profit, profit...at an unethical rate...

I have MS, and so my rates have gone up and my coverage and out of pocket expenxes, as well as my deductable have all increased.

How about adding another 20% to your premium Mr. Victor?
Oh sure....No Praaablem...

Anthem Blue Cross must be thinking that MS'rs are rolling in cash, or that they can price us out of having insurance completely....OR....they realize that Obama's plan will provide a little more of a tax break (which is assumed to mean more money for the individual...which it is NOT) and they can soak us for a little more...

Now that my Tysabri costs are gone, one would think that a more reasonable increase would be fair.....but alas, a 20% increase is now mandatory and benefits are garbage.

Yeesh.

I hope that they go bankrupt after a new all-inclusive plan for healthcare is created.

......and now back to our regularly scheduled programming...


-Vic
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Old 11-28-2008, 08:02 PM #729
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PS...

...How do they expect a family of two (2) to pay over $20,525 per year for their insurance?
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Old 11-28-2008, 08:41 PM #730
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Sheesh is right, Vic. If you're not in the poorhouse yet, Insurance premiums and out of pocket expenses will put you there.
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