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Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Mon Oct 16, 2006 9:48 pm Post subject: Tysabri Infusion Experiences (2006)
I'm infused and I'm enthused!!!!
I had a few snafoos with my first infusion today, but I was assured things will run more smoothly with my second infusion, plus they were being triple cautious with me as I again was the first MS patient to receive Tysabri in the Kaiser So. Calif. system, just like in 2005! Whoa... I had no Benadryl, it was just on standby if I needed it, NO side effects whatsoever (other than being happy and relieved)...I didn't forget to bring doughnuts for the nurses, but I forgot to ask for the Lot # of my vial and the expiration date! DUUUUH me! It had been placed in a Sharp's container by the pharmacist and taken away before I got home, but I was told that the pharmacist made a note on my chart that they are to send my empty vial up with each infusion bag! (after being mixed by the phamcist).
Please share your infusion experience too!
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Tue Oct 17, 2006 1:06 pm Post subject: hi denver.
Because our website www.mspatientsforchoice.org/is keeping track of them so we can determine how many MS paients have been infused..when the Lot # and exp. date changes for that patient, we know quite a few have been infused and a new batch of Tysabri is sent out
Btw, my balance sitting up has improved slightly and I can move my toes on both feet a tiny bit! I'll take those improvements!!! Wooohoo!
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Sat Oct 21, 2006 12:09 pm Post subject:
I was infused yesterday. Chronic Progressive MS since '84. As I was being infused my speech got better. By the afternoon my walking improved, no longer had to bounce off walls. Feeling starting to return in fingers. Pain in legs is less.
This for me, is not like a cold, masking symptoms, I feel better. Not that fatigued feeling. Workout improved.
I type this to let all know there is hope. Ty is not the cure, but it does work for me. This is not a placebo(sp) effect, but a diffrent feeling.
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Sat Oct 21, 2006 3:01 pm Post subject: Congrats Pete!
What WONDERFUL news for you.
Today, 5 days after my Tysabri infusion Monday.....today being Saturday, 10/21...get this: I lifted my right foot about an inch off the ground by just thinking it to move, and I moved my left foot forward about an inch too! I started crying tears of joy as I had not been able to move my feet or legs at all since last year, 6/5/05! I could only do this one time, but THANK YOU GOD, I'LL TAKE THAT ONE TIME IMPROVEMENT!!!! I just pray I can do this more and more with each passing day. I'm can hardly wait until my next infusion, making very small, slow improvements, but improvements just the same, WOOOHOOO!
I don't know about you Pete, but I can hardly wait until my next infusion!
I've said it before, and I'll say it again: "Tysabri Equals Hope"!
Again, congratulations Pete!
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Sun Oct 22, 2006 5:09 am Post subject:
If you and other's want, I will post improvements. I am taking today off and will try to sweat for the first time since '84 on the stairmaster. Can you tell how exited I am. Resigning myself to not ever improving, to this, is amazing.
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Sun Oct 22, 2006 3:35 pm Post subject: Hiya Pete....
Hiya Pete!
Quote:
If you and other's want, I will post improvements. I am taking today off and will try to sweat for the first time since '84 on the stairmaster
You bet I do, please! I look forward to reading yours and anyone else's experiences with Tysabri...improvements or not! And don't overdo on the stairmaster dude! Slow and steady buildup over time, ok? Pleeease?
Quote:
Resigning myself to not ever improving, to this, is amazing.
Yes it is, you need to now resign yourself to the fact you have HOPE again! woohoo!
Pete, may I ask a favor of you and anyone else receiving Tysabri infusions please? The next time you (or any of you reading this post) go for your Tysabri infusion, would you ask (when you first arrive there) that you be given the Lot /Vial # of the little Vial of Tysabri and the Expiration date showing on the Vial and send me the information at LGLBGL2003@AOL.COM with just your State, please? All patients are entitled to this info at each and every infusion.
Our website is calculating how many Tysabri patients are being infused monthly, and we can calculate this by the Lot/Vial # and Expiration dates.
If you, and the others can do this, it would be very much appreciated by not only me and our website, but I'm sure other patients are curious just how many are being infused with Tysabri and you'd be helping them too!
Thanks so much, and easy Pete, easy!
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Mon Oct 23, 2006 10:01 am Post subject:
Finished my workout. 12 min. on the stairs at level 3. Was able to finish and still not fatiqued. A week ago, no way does the stairs even happen. I feel different, not that tired feeling. Hard to explain.
Ty effects each of us differently. For me, this is just amazing.
Joined: Feb 10, 2005 Posts: 309 Location: grenada, ms
Posted: Mon Oct 23, 2006 5:46 pm Post subject:
I am so happy to read that this is working for you all. You may or may not have seen the post in another thread about Gary's Tysabri experience. He had the brain MRI which showed NO scars, then they did the spine. NO scars. Now they think he has Neuromelytis Opitca or Devic's Disease instead of MS. We figured Gary was out of the running for Tysabri when they saw the MRIs, so he opted to get the blood test which will show NMO with 70% accuracy. He has waited so long for Tysabri, which has been given for some NMO, but does not look to be the best treatment. Rituxan will stop NMO and they can monitor his blood for the B cells and give him a booster of Rituxan when it comes back. Bad thing is, Rituxan is considered experimental. HERE WE GO AGAIN!!!!!!! But with it being an approved drug, just not for this, maybe we can get it. It has a real good abstract out on a small study of NMO. Gary had the blood test today, but it will be 5 days minimum for the results. Only Mayo clinic does this test. But I am so glad to FINALLY read some Tysabri results.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Mon Oct 23, 2006 6:27 pm Post subject:
I noticed about 5 eastern that the pain, numbness(sp) in my legs is almost gone.
The people that made us wait for Ty had no idea what this drug means. If given a choice between the chance of death and staying the same as when this was removed from the shelves, I would have taken my chances. Signed whatever.
Somebody making choices for me. That's to full of oneself.(sp) Get a grip. I, we, don't need a big brother. It's my life, not your's!
G. Bush has some set, going against the house and senate to veto stem cells. Watch, that's where CURES are. If you don't agree, don't use them. Tell me how discarding them is diffrent from using them for research? Dead is dead. Go figure. Yes, I'm angry and venting. People have to suffer with diseases that could be helped. All for the sake of one man's belief. Now we wait for '08. Hopefully then, the NIH will gett the money they need.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Mon Oct 23, 2006 6:28 pm Post subject:
I noticed about 5 eastern that the pain, numbness(sp) in my legs is almost gone.
The people that made us wait for Ty had no idea what this drug means. If given a choice between the chance of death and staying the same as when this was removed from the shelves, I would have taken my chances. Signed whatever.
Somebody making choices for me. That's to full of oneself.(sp) Get a grip. I, we, don't need a big brother. It's my life, not your's!
G. Bush has some set, going against the house and senate to veto stem cells. Watch, that's where CURES are. If you don't agree, don't use them. Tell me how discarding them is diffrent from using them for research? Dead is dead. Go figure. Yes, I'm angry and venting. People have to suffer with diseases that could be helped. All for the sake of one man's belief. Now we wait for '08. Hopefully then, the NIH will gett the money they need.
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Mon Oct 23, 2006 7:33 pm Post subject: WOW Amelia and WOW Pete....
Amelia, that's .... ummm, email me your address dear or read the 'News" posted by Arron re: Rituxan and my response thereto, but happy he rec'd a different dx than MS? If he's happy, I'm happy for him. Any word from Ronnie, Amelia?
And Pete?
Quote:
I noticed about 5 eastern that the pain, numbness(sp) in my legs is almost gone
Yeeeowzas!
Could't agree with you more, dude!
All my best to both of you..,
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Wed Oct 25, 2006 5:17 pm Post subject:
I cannot be the only person on this board with a good expierance with Ty. Fill us in, let us know the good or bad. Make it worthwhile visiting here. Hearing myself is boring.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Fri Oct 27, 2006 9:39 am Post subject:
I'll post here.
Just got back from my workout. Inceased to 8 min, on treadmill then 10 on bike. 1% elevation and 1.2 MPH then weights. I could not due any walking befored Ty. Treamill was out of the question. Now, feel tired, but not fatiqued. Out to lunch soon, then rest.
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I am so happy to read that this is working for you all. You may or may not have seen the post in another thread about Gary's Tysabri experience. He had the brain MRI which showed NO scars, then they did the spine. NO scars. Now they think he has Neuromelytis Opitca or Devic's Disease instead of MS. We figured Gary was out of the running for Tysabri when they saw the MRIs, so he opted to get the blood test which will show NMO with 70% accuracy. He has waited so long for Tysabri, which has been given for some NMO, but does not look to be the best treatment. Rituxan will stop NMO and they can monitor his blood for the B cells and give him a booster of Rituxan when it comes back. Bad thing is, Rituxan is considered experimental. HERE WE GO AGAIN!!!!!!! But with it being an approved drug, just not for this, maybe we can get it. It has a real good abstract out on a small study of NMO. Gary had the blood test today, but it will be 5 days minimum for the results. Only Mayo clinic does this test. But I am so glad to FINALLY read some Tysabri results.