i was approved for TY a while ago just had to get my "before" MRI.. done with that now.. getting my first infusion on the 31st of this month.. id be lying if i said i wasn't just a little worried about the 1st infusion.. guess its just the "unknown" and all that stuff.. oh well.

Don't be worried. It is a simple process! As a matter of fact, I look forward to the two or three hours I get to spend getting the infusion. It is a chance to relax, sleep or read.

You will find it very simplistic.

-Vic

Here is my Tysabri update after infusion #9. My graphs show that I have had 10 infusions, but that is because I made a mistake in selecting "0" as a start point rather than 1.

-Vic

Attached Images

TY Data to Week 10.JPG (93.4 KB, 90 views)

Hey Vic? Nice charts, but what's going on there? Are you having a relapse?

RW,

I don't think that it is an exacerbation, since it has been taking a while to get to the point where degradation is more pronounced. It may be the development of antibodies, the monthly UTI's, or stress-related (over-worked)...or a combination of all of them.

My neurologist and I agree to stick with it until N=25, at which time I can draw some statistical conclusions. Prior to that, it may just be speculation about what is going on with me and Tysabri.

I am more than happy to give it more time.

-Vic

Vic,

You know I always love your charts are you posting them on the other site as well?

Hope your lines go back up again. Keep us posted please.

Chris had #4 and although I don't see much improvement we are blessed that things have stablized somewhat

I was thinking about Chris and wondering how he was doing! Thanks for letting us know. Glad to hear you are seeing stabilization!

Dedra,

The other site will not let us postattachments anymore, so I have resorted to written descriptions of my Tysabri performance.

I hope that you and Chris are doing well.

-Vic

Ok, I'll tell the truth. I almost backed out; I have no idea why but I just got in a big panic this morning. I called the center and cancelled. I was crying and just a total mess. A few min later the nice lady who gives the infusions called. We talked for a while and the panic went away. I guess I just needed to vent. On to the infusion.

My appointment was resechuled to 2pm. I took 2 benadryl and 2 tylenol at 1:30 before I went in. I went in at 1:45 and got called back at 1:50. They got it on the 1st stick but it kept hurting so they tried another spot. Yep, a rolling vein. We decided not to dig and went to a 3rd spot. Great all was well. The sticks are nothing compaired to MS, so no problem. The tysabri infusion took 1 hour and then they gave saline. It took 1 hour. I was in and out in exactly 2 hours. I really had no problems at all. I did get a tiny headache so I'm glad I took the tylenol. I was a tiny bit sleepy afterwards, but nothing big. We went out to eat then I can home and slept for 4 hours.

I don't think I'll panic next time and I'm so happy I'm on this drug! It's now been 12 hours since the infusion so I'm fine. Oh, I heard some great news while getting the infusion. They have a man who was in a wheelchair that now can walk with a walker all due to tysabri! The good news about this Ty just keeps coming! I love this drug!

Long lost update

I had my second infusion on March 6th. This time I had to go to the infusion center at the hospital. I seem to be in the 5% of people, who have adverse reactions, but I saw my Neuro today and he wants me to stay on the Tysabri. He said that sometimes it’s takes 6 months to see results and last time I was on, (which seems like forever) I read all your great posts. I’m still hoping! I have just felt really bad, fatigue is killing me. The headache wasn’t as bad the second time. They gave me 25mg of Benedryl thru the IV and started the infusion 10 minutes later. Sure enough, I start coughing and itching so badly they said they were going to put a seat belt on me. So they stop and call my doctor and he said 25mg more of Benedryl. He told them to keep me there and let me sleep it off. LOL, I must have been wired up, I just couldn’t fall asleep although my eyes felt like they had weights on them. I really hope my body gets used to the Tysabri.

He put me on Zanaflex today, increased my Dexedrine and Lorcet. Every time I ask him a question or anything, he says oh you’re just progressing or gives me another pill. Sometimes I really feel I need to check out another Neuro. I’m almost scared to say anything.

I’ve not been on the site in quite a while. Does anyone feel if they stay away from “MS Stuff”, that MS will go away! Go ahead feel free to tell me I’m nuts. Or maybe not think about it all the time.

I still have very high hopes for Tysabri. I am so thankful this isn’t weekly like Avonex!!! My skin would fall off from scratching!! I hope everyone is doing great and look forward to reading all the updates. I saw the trouble someone was having with MSActiveSource, or TOUCH. I called them right after my first infusion with a question. Never heard a word back, then I get a letter from them Saturday, welcoming me to the program?!?!?!? And the Avonex people called me the other day checking on me. I used to complain about them calling me constantly when on Avonex, I will never complain again!

Sorry sooooo long!