What to expect?

[proten]

Hi,
I am starting my first infusion of Ty. I tested negative for the JC virus which helped my decision of going with the big guns initially.

I feel well and have very minimal MS symptoms now. My object is to keep myself like this. (I was diagnosed 2 months ago based on MRI results and 1 episode 5 years ago.)

My goal with Ty is to keep myself relatively healthy as I am now. The interferons have too many side effects to deal with; if I feel good now why make myself sicker. Long term control is my object here and the reason I am opting for treatment.

Because of the major PML worries, I can't find much data on day-to-day side effects. I just want to know what to expect at my infusion. Is it okay for me to go unaccompanied? Any minor/major symptoms to know about? Like what?

All information/experience is greatly appreciated.

Thanks.

[Scooter24]

1st don't stress out over it, I am taking #12 tomorrow, I feel much better on it than I did on copax and avonex, the only problems I ever had was a very very slight headache for a day or 2 after the first 2 or 3, and after being on it for about 6-7 months I feel as though my batteries are running low 3-5 days before my next infusion. But it is well worth it as I have had more energy after the first 3 treatments though not all people seem to.
Others will say to drink lots of fluids and take some pills before having it, I have never done either and have had no problems. Take a book or something to keep you busy for the 2+ hours you should be there.

I go to a larger infusion center at my VA hospital and there are always lots of others there and 3 nurses so that helps pass time and they have a large screen in the room also.

I have always driven myself and don't see any need to have someone go with you unless you need someone to hold your hand which where I go there isn't the room for them and they end up sitting in a nearby waiting room.

Good luck!

[buster]

The first infusion they will watch you for an hr after having it.where I go they offer me an antihistamine before infusion as itmismpossible to get itchy. Be prepared tonbe there a couple of hours,so take something to do with you. Relax the infusion itself is nothing more then an hr iv...I'm coming up on # 18 and get to leave when I am done now. Just be sure to report any weird feelings or rashes to the infusion RN. I sometimes get really tired the day after my infusion, but everyone has different experiences...

[Tomjadg]

Everyone is different.
I've had 4 with no problems, during or after.

I also don't do anything special before I go.

The people that know say give it 6 infusions before it might help, but there are no guarantees. Most people that have been on Ty for 30-50 infusions like it, and say it helped to some extent.

Relax, and good luck. It's easy.

[0485c10]

I'm coming up on # 18 and get to leave when I am done now.

do you do a saline solution after the tysabri? I'm up to #33. after the 1 hour infusion, she runs a saline solution for 1/2 hour then i can go. but at first i had to wait a full hour after the infusion, which was boring. are you able to go right after the tysabri or do you do a saline solution first?

Recently, the last few infusions she has run tysabri for 45 minutes instead of the hour. I like that

[Tomjadg]

My first three I had to stay an extra hour.
Now, I leave when IV is done. No saline.

[REG53]

Hello proten,

I can only tell you what I do and my exp. I am on #50 and with the 1st I had a bad headache & felt tired and sleepy afterward. My neuro recommends his patients take two tylenol and a antihistmine one hour before infusion. Now I only get tired.

I always have someone drive me because I have seen some have a reaction and my neuro told me it could happen no matter how many you have taken but there are many that drive themselves.

IMHO I would get someone to go with you the 1st time.

[lindaincolorado]

Hi proten, I have had 54 infusions, only side effect is rarely a slight headache.
I ALWAYS get infused for 1 hour, a saline flush before and after and I ALWAYS need to wait for the 1 hour after. This is the Touch protocol.
My veins are not an easy stick... so I hydrate well and keep my hands and arms warm; this helps them get my veins on the first stick.
I bring a book and a snack
Best wishes and good luck!

[proten]

I went for my first appointment today. It went extremely smoothly - no side effects at all.

I went myself with no problem (the logistics were too complicated so I gambled and it paid off.)

Thanks all for you responses and advice. It helped me feel prepared and is much appreciated.

[Lendi]

Hey, good deal! I'm so happy the first one is over for you and that it went well.

When I started Ty they put in a saline solution from a bag. Now, the nurse has a couple of big tubes of it and uses them to flush the last of the ty through. I still have to stay and hour after, though.

[LindaT5761]

an hour hooked up to an IV? what if you have to pee?

Under the topic of "what to expect", since the advice is to be hydrated, how does this affect being able to get thru the infusion without a bathroom break?

What has been peoples' experiences?

[Lendi]

The nurse can unhook you from the IV for a few minutes while you take a restroom break. I can usually make it through that first hr but almost always have to use the restroom during the 2nd hr while I'm just sitting and waiting.

[LindaT5761]

a few minutes?

maybe i would make it through the hour. I suppose I should figure how often I go an hour without a bathroom break. It's just that when I go to the bathroom i never know how long it's going to take.

[LL60]

How it is done where I go, you IV is hooked into a machine on a pole that regulates how fast it goes in. You just unplug the pole from the outlet and roll it all into the bathroom. While you are in the bathroom it works on battery. Then you go back to the bed and plug it back in. (I usually pick to have my infusion done in a bed because the chairs are very comfortable for me) I always have to go at least once to the bathroom. I always go after they take the IV out since I always hit traffic on the way home.

Good luck to you.