Tysabri Infusion Experiences (2006)

amelia · Post by **amelia** » Fri Oct 27, 2006 8:35 am

Pete,
You are becoming a poster child for Ty. So proud for you.
Amelia

retired_at_40_01 · Post by **retired_at_40_01** » Sat Oct 28, 2006 6:38 am

Not wanting to be anything but better. Ty has become, after one infusion more than I could have EVER imagined. To lose your health slowly, not knowing what tomorrow will be, is a form of torture.

I have a wife and 3 kids. Have missed much of my life. Would not trade MS for anything. Seems wierd saying that, but without MS I would have missed so much. A long story.

Ty is good for me. I will keep you informed.

Pete

amelia · Post by **amelia** » Sat Oct 28, 2006 11:16 am

Trust me I know about life has had some good times that would never have come about had Gary not had MS / NMO. We don't fight over the little stuff. We don't take each other for granted too often. I have to admire him, because I have seen the "survival" side of him. I have fought with him. The slight moving of a limb after a bad relapse or the first steps after being bedridden; Priceless. I don't know if I cheered as much when our daughter took her first steps. The down side: we have both missed so much. Gary missed most of the ballgames and lesser events in our daughter's life. She loves to hunt, but he couldn't take her. Much that anyone could sit and cry over. BUT.......... all of this said, Ty is bringing hope and life back to so many. I just hate the journey has had to be so slow.

gaharmon · Post by **gaharmon** » Sun Oct 29, 2006 6:57 am

This is my first time posting. I often visit this site though to keep my updated. I just had my first Tysabri infusion Thursday. It's hard to say how I feel. I felt better at first but I think that may have been a placebo affect because I was so anxious to get started. I have noticed subtle changes but nothing to major. I think things will get better after my second infusion.

It has taken me 10 yrs to get in this shape. I know it's not going to change overnight. I just have to take it one day at a time.

George

retired_at_40_01 · Post by **retired_at_40_01** » Sun Oct 29, 2006 7:45 am

An update:

Noticed that I am using my left hand more (I'm left handed.) Why this is an important step. I have not had confidence to use my left hand to
drive with or feed myself in years. Also noticed I don't have to use the bathroom as often.

Keep the posts coming, good or bad, we want to read.

Pete

msladyinca · Post by **msladyinca** » Sun Oct 29, 2006 3:32 pm

Wooooohooooooo George and Pete!

I can hardly wait to get my 2nd infusion next month!

Lauren

retired_at_40_01 · Post by **retired_at_40_01** » Wed Nov 01, 2006 7:53 am

This happened this morning.

Update:

Workout increased by me to 10 min on treadmill at 1.4 MPH with 1.5% incline then 10 min. on bike with a short workout following.
No dragging of legs. Feel good about what I did. Tired, but a good tired, not fatigued. No other good stuff.

Pete

amelia · Post by **amelia** » Wed Nov 01, 2006 2:01 pm

Looks as though Gary will get Tysabri afterall. We talked to his Neuro nurse today. She knows Gary tested positive for NMO, but still wants to put him on Tysabri.
Lauren,
Have you seen any studies of Tysabri and NMO / Devic's Disease?

retired_at_40_01 · Post by **retired_at_40_01** » Wed Nov 01, 2006 3:21 pm

Hi Ian and everybody,

Ian asked me to post a history. So here goes.

In '83 I had numbness in my knees also above and below. Thinking this was from one to many concussions from football(9 years, including college) I never said anything. '84 after many tests I was diagnosed with chronic progressive MS. Going downhill fast. Intermittent steroids and CRAB's as they became available. Stopped all in '03 as being a pin cushion started to get old and it hurt. Never stopped at the gym, just did less & less. Very persistant and always angryat MS.

Received Ty because I was unhappy with current therapy's. I am very well informed about all. I hope this help's.

Pete

msladyinca · Post by **msladyinca** » Wed Nov 01, 2006 4:53 pm

Hi Amelia, and Pete!

Sorry Amelia, I don't, BUT Gary needs to have a confirmed dx of a relapsing form of MS to receive Tysabri, did you know that? And while I think he could benefit from Tysabri, it can't be prescribed 'off label' due to the TOUCH protocol

. Keep me posted Amelia, please.

I need to get going now, my caregiver is serving dinner, and he hates it when I don't come when called, kinda like a cat ;)

Byeeeeee for now,
Lauren

amelia · Post by **amelia** » Thu Nov 02, 2006 6:55 am

We really don't know what is going on with all of this. This is a group of MANY Neuros. There is always that possibility that some sort of study is about to happen. Who knows. As far as relapsing, Devic's, like MS has a relapsing and non relapsing form. Gary is relapsing. Some DR call it "a more severe form of MS" Don't know how that will play in the Tysabri saga. Most of the USA Drs call it MS. It just happens to be a disease that they know what is causing the trouble. Like regular MS, "we think this, we think that", Devic's is known to be coming from the B cells. Yes I know about the Tysabri T cell involvement. Really, I don't think they know much more than us sometimes. And sometimes, I think we know MORE! The nurse is suppose to call "a contact" she has with the TOUCH program to see what is up. We should know something today or tomorrow of whether Gary gets it or not!

msladyinca · Post by **msladyinca** » Thu Nov 02, 2006 11:47 am

(((((((Amelia))))))),

I pray Gary gets to receive Tysabri, and:

Really, I don't think they know much more than us sometimes. And sometimes, I think we know MORE!

You are SO right!

Keep me posted and let me know Amelia, please.

Lauren

amelia · Post by **amelia** » Thu Nov 02, 2006 4:52 pm

It is past the DR office hours, so no word today. I just hate all this WAITING!

amelia · Post by **amelia** » Tue Nov 07, 2006 2:20 pm

My how things can change. I reminded the nurse that Gary did NOT have MS, abut has Devic's. She went back to the Dr to be sure she saw the blood test results. I questioned the Tysabri's T cell involvement with Devic's B cell issues. Dr then said he was no longer a canidate for Ty. She said he could take steroids or chemo. The only chemo available right now is Novantrone. Not the route we want to go. Rituxan is right around the corner for approval, so he will take a 10mg shot twice a month. we will do this until Rituxan is available for Devic's.

retired_at_40_01 · Post by **retired_at_40_01** » Thu Nov 09, 2006 6:40 am

I worked out Wednesday moving the treadmill (which I was not able to do for many years) up to 1.5 MPH for 10 min. followed by 10 min. on bike and then weights. I have noticed fin motor is back to where it was before Ty. Gross motor coordination is the same. The 20th is 2nd infusion, can't wait.

Keeping the community up to date.

Pete