Karen:

I am typing this with tears in my eyes.

If I could post ten thanks for your inspiring post, I would!

Tysabri has been a godsend for me. If it wasn't for Tysabri I wouldn't be working at all! I feel blessed to be able to carry on the tedious day to day tasks and I don't care if it's cleaning the bathroom! I CAN DO IT!

I went through the health crisis and untimely death of my Dad. I couldn't even post about it, because it hurt so bad and I was so run down.

When I look back between then and now, I KNOW it's the Tysabri that brought me back to where I am now. For that I give thanks and keep pushing the good news to others.

Thank you for your thoughtful post and may your experience with Tysabri continue to give you the benefit you have now.:hug:

RW,

We've always been on the same page, I think, with our Ty experiences.

I am so very, very sorry about your dad. :hug: I don't even have the words to express my sorrrow for you.

I am so grateful that I have the strength to deal with my mom's many health challenges. Had this all happened a year ago, who knows? This woman is my hero and my best friend, and I am not near done yet learning from her.

I, also, will continue to push the good news. You and I are both excellent examples that there is light at the end of the tunnel, and that it is not a freight train!

Keep the faith,

Hello Keri,

Give the Tysabri people a call and ask them if there is a waiting period for Copaxone users before they can start Tysabri. From what I recall, the interferons required a "flushing out" period, but Copaxone, which isn't an interferon, did not.

Your doctor may not be up to date with the Tysabri protocol. I don't believe it is a requirement that you try the other ABCR drugs first before getting started on Tysabri.

Remember that in our cases with MS, knowledge is power!

Dave

Difficult to get on Tysabri?
 

Did any of you currently on Tysabri have difficulty starting the process? Just trying to assess how much of a battle I may be in store for ahead of me. I'm hoping it is smooth sailing. So far is has been easy. Blue Shield rapidly approved the MRI (same day) and the home health nurse for the IVSM and the Copaxone right away. With the tysabri I have no idea what I might be up against....not that it's gonna stop me. I imagine my roots will come out - I may have been out of NY for many years...but you know what they say - you can take the girl out NY - but the ***** never leaves her. LOL - kidding - but when it comes to my health - I will have no qualms about crossing the line between between being assertive and aggressive to get the treatment I need. In the meantime - the FDA best not be thinking bout pulling Tysabri from the market. I will be crushed.

Also, how long did it take to get started from when you told the doctor you wanted to start to when you actually did start?

thanks for the info,

~Keri

Hi Keri!

It took about a month from start to finish for me. Some people get started more quickly. Since C isn't working for you and you can't take interferons, I don't think you should have any problems.

Talk to your neuro asap to get the ball rolling.

I have high hopes for Ty. My first infusion is tomorrow, the 13th, I really think it might be great for me.

I'm a northerner and have a quite a large mouth when I need to. I've been using it alot lately LOL!

Mri's and Ty
 

Has everyone had a baseline mri before starting Ty? I've never had a T-spine mri. My neuro wrote a scrip for one a week ago and I'm still waiting for authorization from my da** insurance company.

I won't be able to have the mri until after my first infusion. It's tomorrow, the 13th.

Also, do the infusion centers have benadryl, etc. on hand in case you have a reaction?

My neuro told me that it wasn't necessary for me to premedicate unless I have a reaction to the first infusion.

Thanks ahead of time! :):)

I'd never had a spinal MRI. I hadn't had a brain MRI since Oct. 2005. I had Brain, C-spine and T-spine in April 2007 for baseline before Tysabri. That got me a course of oral steroids ( I was on my way to S.C. for my godson's graduation. Nothing like 60 pills a day when all you want to do is have fun!) I wasn't missing my plane for IVSM! It must have been a nasty picture for the doc to send me off with that huge bottle of pills!

As for having antihistamines on hand...is your infusion center at a hospital or medical center? I would hazard a guess that they would have a crash cart on hand and qualified medical personnel immediately available. I would think any infusion center would, due to the possibility of a reaction to whatever they infuse there.

I have no experience with infusions in a Dr's office. My infusion center is part of a health center/hospital. They do infusions for everyone, cancer, Crohn's, MS, etc. I can see the crash cart from my seat in my room.

I have never premedicated with anything and I have never had a reaction.

I would ask the infusion center staff what their protocol is if someone has a reaction. More than likely they will ask you if you have any questions beforehand anyway. Write your questions down beforehand so you remember them!:D

For today? TRY to relax and just take it one day at a time! More than likely things will be fine tomorrow!:hug:

We'll be looking for you tomorrow for the full report!

Hi Keri,

Getting treatment with Tysabri is a whole lot easier now than it used to be. Dr. prescribes Tysabri, you sign paperwork, paperwork is faxed to MSActiveSource, they call you and the ball is rolling.

It took a month for me, it may be faster now. ( that's not counting the wait from March 2005 to May 2007 when I was finally infused!!)

Good Luck and let us know how it goes!!!:hug:

( Don't EVEN mention FDA and pull in the same sentence!! There would be a whole LOT of crushing going on and it would be the doors at the FDA by Tysabri users!!!)

I did not have a MRI before mine. Last MRI was in the spring.

Hello Joelle,

I had previous MRI's to for comparison so I didn't get "baseline" MRI's per se. My infusion center gives me one Benedryl and two Tylenol about 15 minutes before they start the infusion, just as a matter of course.

For some reason I thought that was part of the TOUCH Program protocol. Maybe not?

I like taking Tysabri. I go to the infusion center at my local hospital, I sit in a comfortable chair in a clean modern facility with big windows. They supply drinks and things to eat and the staff are very friendly and professional. Beside that they remember who I am and what I am there fore.

Besides, sticking myself every other day was getting to be such a drag!

Happy to be on Tysabri,

Dave