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-   -   Tysabri Check In, Support and Information Part Three (https://www.neurotalk.org/multiple-sclerosis/142931-tysabri-check-support-information.html)

Riverwild 01-28-2011 07:37 AM

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.

daisy.girl 01-28-2011 08:36 AM

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.

Riverwild 01-28-2011 10:45 AM

Quote:

Originally Posted by daisy.girl (Post 739402)
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?

daisy.girl 01-31-2011 06:39 PM

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.

Riverwild 01-31-2011 08:29 PM

Quote:

Originally Posted by daisy.girl (Post 740291)
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.:)

komokazi 02-02-2011 04:16 PM

Quote:

Originally Posted by daisy.girl (Post 740291)
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.

daisy.girl 02-02-2011 10:32 PM

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??

komokazi 02-03-2011 02:15 PM

Quote:

Originally Posted by daisy.girl (Post 740983)
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.

daisy.girl 02-03-2011 02:46 PM

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??

Riverwild 02-06-2011 12:14 PM

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. :)


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