Tysabri Infusion updates...

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

Tysabri Infusion updates...

Postby msladyinca » Sat Dec 01, 2007 11:00 am

Hi everyone..., I hope that all is well. If anyone is interested, I had my 15th Tysabri infusion yesterday, Friday the 30th.

After a long nap when I got home, I was feeling wonderful.

I am happy to report that I still have no side effects or infusion site reactions. Even with the cold, rainy, dreary day out here, I was happy to have been headed off for my 15th infusion only a few miles away, rather than fight the rush-hour traffic in the rain going 53 miles one way like I used to have to do. Wooohooo!

The funny thing was, most of the infusion patients (not Tysabri patients of course-ha ha) were canceling and reschedule their appointments due to the rain.

My infusion nurse is so wonderful, she got me on the first stick. Even one of my favorite infusion nurses was there (she had just returned from her vacation) and had pictures galore to share with me which helped pass the time, and before I knew it, it was time for me to leave!

An update on the young girl that was receiving Tysabri and was so disheartened after receiving only one or two (I believe) infusions (she is only 22 years of age and has Progressive Relapsing MS). My nurse spoke to her mother after I had been there last month and conveyed my message to her. I am even more happy to report that I was advised that this young girl has perked up quite a bit, and has hope once again... she is even starting to see some minor improvements in her balance and slurred speech. My nurse also stressed to her mother that as I explained to her last time, if Tysabri is able to slow down the disease process and prevent further relapses, then it is doing the job for her daughter. What a wonderful early Christmas present it must be not only for the young patient, but for her family as well.

I had pizza with mudslides for dinner, and today I am enjoying strength that is returning to my body. With Tysabri, I never lose hope that I will one day begin to see better days ahead for me.

Have a wonderful weekend everyone, take care now.

Lauren :)
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Postby stathis » Wed Dec 05, 2007 9:30 am

Hi everyone..., I hope that all is well. If anyone is interested, I had my 15th Tysabri infusion yesterday, Friday the 30th.


Hello, nice to hear how much of a difference a new medicine can make to our lifes,
well 15th for you msladyinca ........ 1st for me.

Yes got my first Tysabri infusion today and hope to all us Tysaberians, a much better Quality Of Life. Thats the point innit? :wink:
an action brings..... a reaction !
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Postby msladyinca » Wed Dec 05, 2007 11:03 am

Good for you!

Merry Christmas and a very Happy New Year to you and your family...,

Lauren 8) <--- wearing my Senta Shades (heehee)
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Postby msladyinca » Wed Dec 26, 2007 6:23 pm



Hi everyone... I hope you are all well.

My Tysabri Diary... Nothing new to report about my 16th Tysabri infusion today, as I stated before, they are becoming pretty routine now (I like that!). No mudslides and pizza tonight as we are having leftovers from Christmas dinner last night (I taught Ray, my caregiver, how to make my pineapple baked ham with maraschino cherries, my sweet potato pie with marshmallows, and my broccoli/cheddar cheese casserole). These three recipes are special and I only make them once a year (errrr, Ray made them this year as I can no longer cook). But they are Sooooo good and so rich! I think he is going to teach his wife how to make them now - heehee.

I was a little worried about leaving Noël (my 10 week old Christmas kitten that I got two weeks ago as a surprise from my friends Chuck and John) home alone for the first time since she arrived here... I was contemplating coming home and finding our little Christmas tree tipped over, with all the ornaments broken that Chuck's wife Sheri had so painstakingly selected. But we only arrived home to find Noël sleeping on my bed with her little mouse...soooooo cute! When she saw me, she immediately jumped into my lap, mouse in mouth-LOL.

I did find out that my small infusion center now has four additional Tysabri patients (all added within the last month!). I wonder if they will be able to handle more because the infusions center today was jam packed full of patients.

I also chatted briefly with another Tysabri patient that was there, but she wasn't in a very good mood (I presumed she was having a bad MS day, as it was pretty cold outside and severe weather changes can definitely affect MS symptoms in a majority of most MS patients). She was also disappointed that she hasn't had any improvements after only four infusions.

I told her to never lose hope and that she might start seeing small improvements by her sixth infusion, but they could happen at any time. I told her that even though I was receiving my 16th Tysabri infusion, my MS is now stable and I haven't had a relapse nor any disease progression in over a year. Tysabri is doing exactly what it was designed to do... prevent further relapses and their accumulating disabilities, including slowing/stopping the disease process with superior efficacy of 67%. I also told her that I never lose hope that I will start to see more small improvements, and I hope to walk again one day. Tysabri = Hope.

She definitely seemed to brighten up a bit, but I still pretty much left her alone after that to contemplate what I had told her, but I also told her I would see her next year, same time, same place (that made her smile again), and if she had any questions about Tysabri, I would be happy to try and answer them (cautioning her that I was not a doctor). We exchanged names, and I left... wanting to get home for a quick bite of dinner, and then turn early.

That's all for now, other than I can hardly wait for tomorrow!

I hope everyone had a fantastic Christmas yesterday... woooohoooooo!

Lauren :)
Feel free to visit my Blog and leave me a comment, I'd love to hear from you! :)

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Tysabri infusion update...

Postby msladyinca » Thu Jan 24, 2008 4:11 pm

Hi everyone,

I had my 17th Tysabri infusion yesterday, and this is what I posted on my blog last night:

I had my 17th Tysabri infusion today, and it went smooth as silk. No problems, no allergic reactions, basically boring (I'm enjoying being bored regarding my infusions-gives me a chance to get all caught up on my court shows like Judge Mathis, Judge Joe Brown, Judge Christina, Judge Millian, etc., heehee). The other lady that I met last month had to reschedule her Tysabri infusion because she was sick. No one else was having Tysabri today, just me. The other two patients that were there were having chemotherapy.

The infusion center was pretty quiet today because it was pouring rain outside. Same thing happened last month, just a lot of rescheduling (although last month it was pretty busy and jammed packed because it was the day after Christmas).

I did learn that two additional Tysabri patients will be going to my infusion center (these are in addition to the other two patients that were added last month), so Tysabri use is picking up. I guess Biogen can add another four more Tysabri patients to the over 21,000 patients currently on Tysabri therapy!

I'm going to go check my e-mails, and then I am headed off for pizza and mudslides for dinner ( Yum! ), and then I'm hitting the hay early because I'm pretty tired right now. I'm sure looking forward to tomorrow!

Have a great evening everyone, all my best-

Lauren
:D
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Postby deege » Sat Sep 20, 2008 5:00 pm

Thank you for your posts. It is good to hear that things are going well, and that you are not experiencing problems. Please keep us posted so that we can feel better about what we are doing (I had my first infusion 2 weeks ago).
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Trial to Study the drug Tsyabri

Postby mike551 » Thu Dec 18, 2008 11:06 pm

there is a <a href="http://trialx.org/clinicaltrial/81031/ms1-pharmacokinetic-pk-study-tysabri/" title="clinical trials multiple sclerosis">clinical trial going on to study the drug tysabri. </a>
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Postby harveythewonderhorse » Fri Jan 16, 2009 12:44 pm

Had my first infusion last sunday, was absolutely wiped out the next day ,hot and cold ,v tired and muscles sore all over. Hope this will not be a regular occurance, as I had to miss work on the Monday.
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