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Tysabri Information and Check In part 2

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Old 08-20-2009, 12:29 PM #161
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Whoops, I put a Tysabri thread in the wrong place It's re my 37th infusion

Polar, what good news very happy for you!!

Wiz, sleeping always helps and hope you can get that exercise "thang" together

Linda
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Old 08-20-2009, 12:38 PM #162
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...and I answered in the wrong place...

Either place, congrats and glad to hear things are working out because you truly are OUR trailblazer!
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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?


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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Tysabri withdrawn from market 02/28/05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 09-01-2009, 07:58 PM #163
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I had #15 yesterday. It's hard to believe I've been on Ty. for this long but it seems to be working wonderfully. Nothing much to report. Still had the 2 hour infusion followed by 1 hour of saline. I felt really crummy for only 24 hours. I'm now back and functioning. Not too bad!
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Old 09-02-2009, 04:09 PM #164
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Natalie, working wonderfully, how great
Happy for you !!
Linda
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Old 09-02-2009, 05:29 PM #165
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Wow Natalie! 15 months already? It seems like yesterday!

So do you feel as if the steps you took, ie. slowing the infusion, premedicating, etc. helps with the aftereffects you were having?

Glad to hear that you are pleased with the results!
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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 09-02-2009, 10:50 PM #166
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Quote:
Originally Posted by Riverwild View Post
Wow Natalie! 15 months already? It seems like yesterday!

So do you feel as if the steps you took, ie. slowing the infusion, premedicating, etc. helps with the aftereffects you were having?

Glad to hear that you are pleased with the results!
I know! I can't believe it is #15. Time flies by quickly. Yes, I definitely think slowing down the infusion has helped significantly. The worst effects I ever got were when the old nurse ran the infusion over 45 minutes. I was sick as a dog in bed for 4-5 days--headache, muscle aches, nausea, flu-like stuff. The whole thing is so strange because in the beginning I didn't always have intense side effects--or at least not every infusion. And then some infusions are more tolerable than others but overall they are better since it has been slowed down. This time I drank a LOT of water and went in very hydrated. I think over time you start to figure out your body and its reaction to the drug, just like you (RW) had the pinpoint itching for awhile and came up with a solution.

I think more doctors should suggest slowing down the infusion if people are having any side effects. I was looking through the Tysabri site on www.thisisms.com and I was amazed at the number of people who have had issues -- nothing overwhelming but enough such that I wouldn't say all people going on Ty. should expect a free ride. Nausea, headaches, and dizziness/cog. fog for a few days seemed to be a problem, especially in the beginning months.

I have always been hyper sensitive to medications of all kinds. If I feel crummy for 1 or 2 days a month then it is worth it to me. I certainly couldn't tolerate the Rebif or Copaxone.

Have a good weekend everyone!
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Old 09-04-2009, 03:24 PM #167
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I will have my first Tysabri infusion September 25.

I have a very positive attitude about Tysabri, and I know in my heart that it's going to help me.

So, as a new member of the Tysabri group, I wanted to say hello to all of you.
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Old 09-04-2009, 07:40 PM #168
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Welcome to the Tysabri group Mary Ann!
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RRMS DX 01/28/03 Started Copaxone again on 12/09/09
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Old 09-04-2009, 07:42 PM #169
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Today I had my 30th infusion, it went off without a hitch as usual. I came home and worked in my office and puttered in the garden and I feel great!
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RRMS DX 01/28/03 Started Copaxone again on 12/09/09
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Old 09-04-2009, 07:48 PM #170
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Welcome to Tysabri Mary Ann! Looking forward to hearing how you do!



Wiz! 30 ROCKS! I am #30 Thursday! Hard to believe we are that far along, huh? Yay for coming home and having a normal day!
__________________
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!
.
Riverwild is offline  
"Thanks for this!" says:
azoyizes (09-04-2009), ewizabeth (09-04-2009), Grammie 2 3 (09-07-2009), Natalie8 (09-06-2009)
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