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Old 01-28-2011, 07:37 AM #31
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For me, the side effects when I started Tysabri were minimal. I had a sore throat after three or four infusions, it appeared that the parts of my tonsils that grew back after a tonsillectomy many many years ago were inflamed. It was mild, more irritating than anything else, and stopped after a few infusions.

I literally haven't been sick with the usual maladies at all since I started; no colds, no stomach bugs, nothing. I had an appendectomy, I had salmonella from something I ate, and I had a UTI for the first time ever. This is since 2007. I haven't called in sick to my job since 2007, was out on medical leave for the appy, was on vacation when I got the salmonella and went to work when I had the UTI.


I was nervous when I started, wondering what ailments I would get as a result of using Tysabri. I calmed down after 6 infusions and now it's just another day. I don't know if I am just lucky or that the revved up immune system that goes with MS is working, but for me, it's a normal life since I started.

I had #48 yesterday. No problems, no concerns, in and out as usual. I met with my neuro afterwards. He told me I am disgustingly healthy and told me to get lost. It was 15 minutes, in and out of the appointment.
__________________
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Tysabri withdrawn from market 02/28/05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 01-28-2011, 08:36 AM #32
daisy.girl daisy.girl is offline
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I have a questions about when and why they won't do an infusion.

If you are in a Flare or have a new symptom, will they still do the infusion?

Has anyone went to there scheduled infusion and not have it for some reason?

thanks, I go Feb 2 for my first infusion.
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Old 01-28-2011, 10:45 AM #33
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Quote:
Originally Posted by daisy.girl View Post
I have a questions about when and why they won't do an infusion.

If you are in a Flare or have a new symptom, will they still do the infusion?

Has anyone went to there scheduled infusion and not have it for some reason?

thanks, I go Feb 2 for my first infusion.
The infusion center will ask you a few questions. If you report anything in response to those questions, they will call your neurologist and ask him for his approval or disapproval in response to your answers. You may end up waiting hours until he calls them back but they will not give you the infusion until he responds. If he feels that the infusion should be withheld, you don't get it, period. Here's more info and the list of questions:
http://www.tysabri.com/tysbProject/t...ng-program.xml

I am careful to report any new or unusual symptoms to my neurologist when they occur and last more than 24 hours, as he has instructed me to do, so he knows about anything that may be going on before I go for the infusion. For some it is 48 hours, but my neuro is watching me pretty closely after 48 infusions, so it's 24 hours for me.

I haven't been refused an infusion yet. I skipped one since May 2007 because I was laying in a hospital bed looking up at all the bags hanging on the pole after an emergency appendectomy and feeling like i was going to vomit every 5 minutes, despite taking Zofran. I decided on my own to skip that infusion, with the blessing of my neurologist. He said it was up to me but he had no objection to me having the infusion or not having it, and said that the antibiotics I was on would not affect the infusion process at all, nor have any adverse effects on me.

When you get sick, you treat the illness. When I had a UTI it was treated. I had an impacted wisdom tooth, it was treated. I had salmonella, it was treated. If you have a relapse, it can be treated with steroids.

It's the long term therapy (pulse therapy) with steroids that is not allowed. You may not be allowed to have infusion if you are on chemotherapy for cancer treatment. You will not get your infusion if you have taken any immunosuppressants- but wouldn't your neurologist know about them anyway if you are reporting as you are supposed to do?
__________________
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 01-31-2011, 06:39 PM #34
daisy.girl daisy.girl is offline
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1st Infusion scheduled for this Wednesday at 11:00AM.

I am a bit nervous. I have a friend that will drive me for this first one. My infusion site is about an hour away. So thought it best to have someone with me.
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Old 01-31-2011, 08:29 PM #35
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Quote:
Originally Posted by daisy.girl View Post
1st Infusion scheduled for this Wednesday at 11:00AM.

I am a bit nervous. I have a friend that will drive me for this first one. My infusion site is about an hour away. So thought it best to have someone with me.
Good Luck! Please let us know how it goes for you.
__________________
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 02-02-2011, 04:16 PM #36
komokazi komokazi is offline
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Quote:
Originally Posted by daisy.girl View Post
1st Infusion scheduled for this Wednesday at 11:00AM.

I am a bit nervous. I have a friend that will drive me for this first one. My infusion site is about an hour away. So thought it best to have someone with me.
Great success! Please let us know how it went.
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Old 02-02-2011, 10:32 PM #37
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The office rescheduled me to Friday. Now I have a sore throat, and the nurse told me to call tomorrow to let them know how I feel. I feel fine, other then my throat is sore. Is that reason enough for them not to do my first infusion??
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Old 02-03-2011, 02:15 PM #38
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Quote:
Originally Posted by daisy.girl View Post
The office rescheduled me to Friday. Now I have a sore throat, and the nurse told me to call tomorrow to let them know how I feel. I feel fine, other then my throat is sore. Is that reason enough for them not to do my first infusion??
I don't think so, but I'm not a Doctor. The big factor to watch for is a fever which is a sign of an active infection.
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Old 02-03-2011, 02:46 PM #39
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woke with a low grade fever this morning....neuro wants me to reschedule!! I am frustrated, because I am a little nervous and have been preparing myself for this....and now I have to wait again!!
at the end of next week we are going out of town for 10 days.....so don't know if I should schedule it for early in the week or just wait until we get back into town??
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Old 02-06-2011, 12:14 PM #40
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I'd follow my doctor's advice.
It may be that you will feel better waiting until you get home from your trip.
You seem to be very nervous and being in a comfortable place for any unexpected adverse effects is a good thing.

I know others have had aftereffects, but for me, it's just a normal day when I have my infusion, and always has been. Other than a slight sore throat for a few infusions, I had no problems. It's normal to be nervous before the first one, but the infusion team will be watching you and know what to do now, unlike when the first infusion centers opened and had no idea what to expect from this new drug.

Let us know how it goes.
__________________
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   Reply With QuoteReply With Quote
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daisy.girl (02-07-2011), Natalie8 (02-12-2011), shayna (02-20-2011)
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