Tysabri...it's my last option.
 

After reviewing my 2 page list of questions and comments about the Avonex experience the Doc agrees it is not working for me. Going in now to get my blood tested to see if my liver is reacting to it and that is what is causing the bruising. And we filled out the paperwork to start TY.

And if the Tysabri doesn't work? (I mean my track record for MS drugs speaks for itself)... Then i have the option of high dose chemo or clinical trials. So we are putting all of our eggs in the ty basket and praying for the best.

Oh and I get to go in for more MRIs. This will be numbers 12 and 13 since last October. The first words out of my mouth the Doc this morning were "I am willing to bet money that I have grown 2 new lesions since starting Avonex". And judging by my sx she thinks I may be right. So let's go take a picture of them!

The good news is she is proactive. And she listens. The bad news is she is terrified of me not being on DMDs and she wants me to stay on the Avonex until the insurance approves the Ty infusions, and then stop the Avonex, wait a month and start the TY. Because if my insurance denies it for some reason she does not want me to be without some sort of drug. So we will see what happens.

Good Luck! :)

I don't believe you will have a problem with insurance. You've failed on interferon therapy. Your insurance has paid for 11 MRIs already in a year. Your doctor is writing the scrip.

Try to get an infusion center that is close and that is NOT a private infusion center (they charge more!)

I go to my local hospital to their oncology center. My insurance covers Tysabri under major medical ( hospital benefits) They pay 100%. It may not be the same for you, but make sure you do your homework now, so that any co-pay is not a surprise to you.

If you need any information or assistance drop me a PM. I have INFO!:p

PS- never say you have no options! There's a LOT of stuff still available! :hug:

I understand your dilemma and how you are feeling. I have been unable to take betaseron, copaxone, and tysabri due to allergic reactions, infusion reactions, and the development of antibodies. I know that I may have to consider chemo or a clinical trial at some point. Lots of people seem to be having luck with tysabri. I hope your insurance approves it quickly and that your experience with tysabri is a positive one.

I am clinging to the Copaxone needle, and seriously thinking of laying it down. I have been offered Ty, but am chicken...bawk bawk bawk...

Best of luck to you. I hope this reigns in the monster. :hug:

Good luck Leggz, :hug:

I hope it will stop the MS and give you some much-deserved relief. :hug:

All the luck, Legzz..:hug:

Good luck, Legzz. :)

Legz, weren't they looking at Devic's for you a while ago? If so, what happened with that?

Cherie

Clinical Trials
 

On the subject of clinical trials - I was at an MS Research Forum on the Weekend put on by the Australian MS Research Foundation in Sydney - a speaker at the forum was a guy called Richard Burton, from Northwestern Uni, Chicago. His talk was amazing and I cried when I saw pictures of people recovered from lupus and MS. Seems he's been going down this path for some years now - has data of 5+ years and once the stem cell therapy has occured - (providing they get you and your organs early enough) they can stop it for good - no more drugs needed. Can you imagine?

I'm new to this chat room and found it searching for feedback on a place called X-cell Centre in Germany - that apparently performs Stem Cell therapy - on your own stem cells, so it takes the ethical concerns of using embryos out of it. I'm no expert - but from the little reading I've done not all Stem Cell therapy is the same.

If you get a chance at a clinical trial - I'd go for it!

Has anyone got any knowledge of anyone whose undergone treatment at the X-cell Center (Cologne or Dusseldorf) - I am seriously considering it.

I was diagnosed this year after I lost the sight in my eye (plus other stuff) - it's partially recovered but the MS wants the other eye - it tells me every day - so I'm pretty desperate to find more than just the capaxone they've got me on at the moment. If anyone knows anything more on stem cell therapy I'd love to hear from them.

Actually I have been following an online video blog of a patient with MS as she has undergone stem cell therapy in costa rica. it's on youtube. I think stem cell therapy really is the most promising and least invasive/toxic option out there. The only prpoblem for me, is the inability to pay for it and travel to get it done. But you may want to check this one out.

http://www.youtube.com/user/hollyhuber

Welcome to NT msozwoman. :welcome_sign: It's an awesome place with some great folks. Pull up a chair and stay awhile. :)

Insurance company better get off their high horse and approve the TY very soon...Like in the next day or two. Because I am about to call the neuro and make her very unhappy.

Did my Avonex last night (which I put off from Sat until after I spoke to doc). Normally do it during the day but honestly was trying to forget about it when DH2B offered to stick me in the arm. (And by offered, I mean threatened to handcuff me to a chair and stick me anyway, so I can choose the easy way or his way). And then....

Broke out in hives again on my legs around midnight. . . Then woke up at 4 am with the flu like yuck! I am so done with this drug! And it was my last dose, I am at this point saying I am not willing to pay for yet another shipment and I am not willing to subject my body to this any longer. I get that she wants me on a DMD until the TY gets approved; but we already know that said DMD is not working for me, she is taking me off of it for this reason.

So I will call her today. Wish me luck.

Good luck! Your neuro cannot make you take a drug you are not willing to take. It sounds as if you have given it "the good college try."

Aren't you supposed to be off the other DMDs, for a time, before starting TY?

A month...but she wanted me to stay on the Av until the uns approved the ty. Which makes no sense bc it is not working.

It's also causing you hives and yucky flu....DROP IT, like a hot potato..:mad:

I agree! It could be making you worse since you're having a bad reaction. You should be off of it for a month or two before the Tysabri I think.

I hope you'll get spectacular results from Tysabri. :hug: