NeuroTalk Support Groups - Tysabri Information and Check In part 2

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Tysabri Information and Check In part 2 (https://www.neurotalk.org/multiple-sclerosis/84538-tysabri-information-check-2-a.html)

we put up a cheerleading thread for you mary ann! we hope you do great! :hug:

Quote:

Originally Posted by azoyizes (Post 571090)

I had my first Tysabri infusion yesterday with no side effects, except that I did get a slight headache and upset stomach yesterday evening. Seltzer and Tylenol did the trick.

I signed up for the TYGRIS study.

This is so exciting! I am thinking many positive thoughts! :)

Glad it went mostly well :)
What is the TYGRIS study ?
Linda

Quote:

Originally Posted by Grammie 2 3 (Post 571102)

Glad it went mostly well :)
What is the TYGRIS study ?
Linda

Linda, I'm mostly quoting from the paperwork that was given to me.

TYGRIS' purpose is to collect info on serious infections, cancers, and other serious side effects that may occur in patients with MS being treated with Tysabri.

After putting in the IV, the infusion nurse takes a syringe of blood to check liver levels, etc., plus a tube of blood for TYGRIS. Evidently, the latter tube of blood is kept in long-term storage for future testing.

Mary ann, congrats on the first infusion and I'm glad it was so easy for you. I hope you have success with Tysabri!!:)

I'm getting infusion #16 right now. I have a lot of time to kill since they slowed the whole process down! Fortunately, they have internet access so I can waste some time! It took the nurse 3 sticks to get the line in. Ugh. And the first one hurt like hell. The last time it took 2 sticks. She is usually pretty good. Are my veins drying up or something?? :eek:

Natalie,

It could be the nurse's technique. My veins are fine if the person is skilled at starting an IV.

Natalie,
YAY!!! for #16!

When I had my appendix out, the surgeon told me to drink 3 liters of water every day because the surgical team had noted that I was dehydrated. I drink enough for me, I think, but when I told my infusion nurse what he said, she agreed with him.

I always felt that I had enough to drink because I wasn't thirsty, but after I tried drinking more, I noted that I WAS thirstier than I was before. I've increased my fluid intake since then and if I don't drink enough, the nurse always comments on my veins.

I got to thinking about it, and when I was more active I always had a water bottle with me and drank a LOT. As I became less active my fluid intake decreased and I just hadn't noticed. I stopped carrying a water bottle. Now I take a 2 liter bottle of water to work with me and try to sip on it all night. It does increase my bathroom trips, but I have gotten used to using the bathroom before I go anywhere now. I've noticed a change in the color of my urine, it's not as dark as it was before.

Drink more fluids and see if that helps, even if you think you drink enough.
Sometimes we just DON'T realize that we need more! :p

Had similar problems my last infusion. I usually use my right arm for needles, but looks like I'll have to change locations. The nurse said she thought the vein was scarred, which made it difficult to get the needle into..It hurt!

Natalie,
Glad for #16 :D Sorry for the sticks/pain :(
I agree with Riverwild drinking ALOT of water and noticing color of urine. My infusionists are getting better and smarter because I am. I have learned my veins are deep and rolling. I pass this along to whoever is doing it and I have many. I, also, let them use my hand (at times) it doesn't hurt much; the thought of it made me cringe but it's not bad.
Hope you have better luck with 17 :hug:
Linda

Quote:

Originally Posted by Natalie8 (Post 571877)

So sorry about all the sticks. The same thing happened to me Friday. First stick didn't stay in the vein, second stick blew the vein, third one on the other arm worked. Vein stickers have always had trouble with mine, though.

What do you mean when you said that they slowed the whole process down?