Tysabri Infusion Experiences (2006)

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Postby noreen » Wed Jan 31, 2007 7:37 am

Pete,
I had to stop driving a little over a year ago. I don't really miss it because I live in an area that is filled with nutty drivers (Arlington, Va). My question is, did you ever have to stop driving? My biggest problems have been a very negative and hopeless attitude, plus I can't really walk. Fortunately, my "old" can-do attitude is seeping back and my walking has gotten a little better. I hope this is due to Tysabri. On to infustion #4!
Noreen
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Postby retired_at_40_01 » Wed Jan 31, 2007 8:02 am

As much as people want to be negative, it's the little things. No, I never had to stop driving. My wife and I bought hand controls in the '80s but never had them installed. Attitude is everything!

I remain positive and now hope is here. Cures are with stem cells, watch what happens when they conduct trials on spinal cord injuries and a toe moves. 4th quarter of this year by a company called Geron.

Pete
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Postby noreen » Wed Jan 31, 2007 8:23 am

Pete,
What kind of hand controls and where did you get the info? I'm really wanting to get back into life and hand controls for my car would be a good beginning. I just never knew you could just buy them and have them installed. Thanks.
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Postby amelia » Wed Jan 31, 2007 9:39 am

Pete,
It is really odd the changes you mention. We have a friend that just has #1 infusuion 2 weeks ago. Things that were going on before Ty: MASSIVE amounts of urine produced. Bladder would fill up and then with little warning, release, anywhere. He was beginning to get up at 3 and 4am each day. Now he sleeps a full 8+ hours. He is NOT producing as much urine as before. Before Ty, he had wierd body temperatures. Now that seems to be settling. It is crazy the things MS effects. You just don't read about this in the books about it.
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Postby retired_at_40_01 » Wed Jan 31, 2007 1:42 pm

I don't remember how I received the hand controls. You can definetly(sp) but them seperate. As far as urine buildup is concerned, I have noticed a difference and again, that by far, is a huge difference maker.

If I went by the book and listened to doc's, I would not be working out all these years. Don't get me wrong, I struggle everyday. I just have no tolerance for something(MS) or somebody telling me I can't do it.

Pete
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Postby amelia » Wed Jan 31, 2007 2:42 pm

I just have no tolerance for something(MS) or somebody telling me I can't do it.

Amen Pete!
Gary has been told so many times that he would never walk again. Sorry to all the DRs, but he does. With a cane, but he does walk. He also runs a rototiller in the hot summer. Against my wishes, he does lots of things. BTW, heat has never bothered Gary, even though he has Devic's. Devic's is much like MS, even with the fatigue and heat sensitivity. His Neuro said he would see NO improvements when he started his medicine, but he DID.
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A funny thing happened on the way to the gym.

Postby retired_at_40_01 » Sun Feb 04, 2007 11:07 am

OK, a story that happened on Sat.:

It snowed here, about 2 inches. So, being a bright boy, took my sons car which is outside to the gym. Cleared the car of snow the best I could. Was about 1/4 mile from the house and got out to free the windshield wipers. Freed them and turned to get back in the car and it was locked. Car's running, cane in the car and I'm in shorts and a T ready for the gym. Deserted street. No cell and it's cold. Freeze or try to walk back to the house. I tried to walk and lucky for me somebody came by and picked me up and brought me to the house where I found a spare key. She waited and all turned out OK. Still went to the gym, but what a time and a vagabond I must have looked like.

Moral of the story: Don't lock your key's in the car.

GO BEARS!!!

Funny now, but not yesterday.

Pete
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Postby MSresearcher » Mon Aug 13, 2007 6:53 pm

Pete,

I was encouraged to post to share another Ty experience. I have completed 6 infusions and I have noticed 2 things 1. My energy level has improved 2. My heat tolerance has improved. I was unable to endure anything over 73. I am currently have my thermostat at 78. I look forword to reduced electricity bills :lol: I am hoping to see improvements such as yours in the future.

Good Luck
Joe
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Postby Lainie » Mon Aug 20, 2007 3:46 pm

Just had my 1st infusion (about 5-6 hours ago). I felt fine during the infusion, and for a couple of hours afterward felt like I had more energy (although this could be because I fell asleep during the infusion and was more rested than usual). I feel my usual tiredness now, but not my usual numbness in my feet, and I feel like I am walking with more energy and vitality.

All in all I feel okay, and am hopeful that I will continue to improve.
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Hope Finally

Postby KimG » Fri Aug 24, 2007 7:15 am

First time here, so "Hi". I had my first relaspe since diagnosis and treatment started in 2001. I was/am on Avonex. I have not improved but in some ways am getting worse slowly since my relapse. In February I finally stopped working as a Teacher's Aide, after talking off tons of sick days going back, taking off, yo-yoing. I also injured my siatica so, I was on leave for a little while for that, and was able to hide the truth from myself because of it for a while. It has been hard, even worse when I was first diagnosed. I got on Avonex just in time I think, as I was having so many relapses so close, and loosing some of my ability to walk, and was needing a cane and when shopping a scooter. I improved so much with the avonex that I was able to pretend that I waas okay sometimes, only those who knew me well, knew what was wrong. Although I never hid it, as i told most people I had regular contact with about it of rwhen I had those moments or days, so they din't think I was some sort of freak. Most of my problems have been in cognitive/memory and commmunication, physical over the years was mostly clumbsiness, shaking, spasms, with a heavy leg feeling when tired. Fatigue was big for a while, but until the last relapse it was controlled by a drug I have lost the name to. Now I am off owrk for a while longer as I await confirmation of tysabri and hope that nothing happens while weaning off Avonex once I know when I start. I am taking anphetimines (sp? - aka legal speed) and that has taken me out of the fog I was in and help some other things.
Anyways - to my point. My husband and I had a major greiving period after finding out the Avonex wasn't working and my only real hope of functioning again was tysabri. Only heard about it then so we. First time that my MS really brought me down and made me cry. I had always tried to be possitive about it, that it was a blessing in disguise, making be stop the extras and focus the important things - family. We would laugh about my "MS moments", etc. This relapse really scared us both, and our families (those we were related to but live far away and our "chosen family" of close friends where we live). I have been feeling more in control and more positive about tysbri's chances of helping me, as I was going through the motions of getting things set up, but now I really feel hopeful, seeing the diference it is making for others, and am looking forward to starting. Thanks!
Sorry so long - the speed makes me a little chatty at times!
I look forward to being part of the "group".

Kim
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Postby Lyon » Fri Aug 24, 2007 12:35 pm

Welcome to the site Kim and "grieving" was probably an accurate term for the situation.

I hope your transition to Tysabri goes well and that it produces the results you hope for.

Bob
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