Starting tysabri next week, any advice??? :)

[sunshine008]

Hi, my first infusion is next week, and I was wondering any advice from those that have been on it?

I know the tricks when it comes to the steriod infusions, what to bring take etc.

I was just wondering anything other than water should i bring to infusion, candy to suck on to get rid of taste of med etc? Their giving me a shot of benadryl beforehand because i always have side effects with meds.

I've tried the others, and I have new plaques in the back and front of brain, so i kept tysabri in my back pocket for a while, neuro said unless you want to be severely disabled it's time.

so here's hoping

[hunterd]

when I was taking Ty, I did not experience any of the side effects. All I used to take to my infusions were things that would keep me occupied for a few hours. I drank a lot of water before hand, I do not know if that made any difference or not. Good luck to you!

[sunshine008]

That's a super positive response! yay thanks! i'm hoping I fly through it also with no side effects and nothing but more energy and healthy again!

[pennstater]

You definitely want to make sure you drink water. Its easier to work with your veins that way.

I usually take a small fleece blanket, but they should give you one if you need it. I get cold. I take water, something to read or puzzles. I also take a granola bar or something in case it runs longer.

Good luck and let us know how it goes.

[sunshine008]

I think one of my apprehensions is that I work, alot. So, I'm wondering what type of side effects will come through the month after the infusion?

I got hit with alot of side effects with all the other ms drugs which is why now i'm going on tysabri. Difference is with the others you can just stop taking the med,whereas tysabri is in you all month long.

I've been thinking drive with benadryl in my jeep everyday???

[ru4cats]

sunshine 008,

All the best with your 1st infusion. I'm going for #56 tomorrow, and I couldn't be happier !
As I've mentioned before, I (along with many others on Tysabri) have no side effects, none, nada, zilch! For me, Day 1 is just like day 28; I walk into my infusion, spend a couple hours relaxing with a good book on my iPad, and walk out for the drive home. A few on Ty do have some side effects, but I'm not one of them.
I concur with something to drink, a blanket that I got from Biogen before my 1st infusion, and I take some See's lollipops to suck on. All the best! Good luck!

[hunterd]

ditto about the side effects. never had a one, developing antibodies and having to stop was a bummer.

[pennstater]

I am a liitle more tired that day and the next day, occassoinally a light headache. But I think that is when not hydrated enough.

Aside from that, I can tell when it is a few days before next infusion, as I have increase in MS symptoms which I think is associated to fatigue. Once I get next infusion, symptoms go back to my baseline.

Good luck.

[sunshine008]

thanks for all the responses, i appreciate it. have you noticed the tysabri helping at all with your mood? I've been struggling so badly with odd behavior changes as of late. I have this large plaque smack in my frontal lobe. So, i've become highly over reactive to everything, and that's not good for my family or my clients..

i'm hoping tysabri works..

[KatieAgain]

My first infusion, I got a headache. I also am a bit tired right after, but fine the next day. Other than that...no side effects.

You are going to do great!

[lindaincolorado]

Hi Jen, I had #98 last Tues Been on Tysabri a smidge over 8 yrs-some of that I've gone 5 or 6 weeks instead of 4.

I have had a slight headache a couple of times; that's it-no other side effects.

I keep myself hydrated and the morning of my infusion I do have a cup of coffee, it seems to plump up my veins I no longer have to wait the hour after the infusion, but when I did I brought something to eat, I always have more coffee and read a book. They offer me a pillow under my arm and a blanket-sometimes I want sometimes I don't

I bet you do just fine
Good Luck

[hunterd]

I cannot speak for anyone else, but it did nothing for mood.

[momof4boys]

Drink drink drink .. The day before I drink about a 100 fl ounces of water. If I'm not well hydrated, the joint pain is unbearable. I have gone after Tysabri and played a USTA tennis match, it just depends on the fluid intake for me.

[Special Kay]

I'm like hunterd, I haven't noticed even any tiny difference in how I feel with my infusions (I'm about to do #24).

I don't act any differently on Tysabri days at all, except that I have to go sit in the infusion room for two hours. The only thing I bring is something to do (work, a book, podcasts). I also don't make a point to drink too much water, in large part because I don't like dragging the IV pole into the rest room.

They could be infusing me with saline the whole time for all the impact I feel!

Good luck!

[sunshine008]

Hi thanks for all the advice i do appreciate it! Wow you are tough..lol

me, was a good time some side effects, nothing a bag of steriods couldn't handle... terrible acid reflux all weekend, stomach cramps, soo sleepy.

yet today i'm off to work... cut my hours down for the first two days in, hoping by wednesday i'm normal, whatever that is!