Legzz,

Have you tried Copaxone? It's working great for me. Also, I recall a treatment protocol where they use Novantrone for a period of time then follow up with Copaxone thereafter. I know a couple of people who were having similar problems as you and this seemed to work. Something about the chemo knocking down the aggressive disease activity then the Copaxone keeping it leveled afterward.

C was the first one I was on. She might try revisiting it after we stop the Ty. I didn't have any probs with the C, I stopped taking it for other reasons and when I did almost all of my sx went away within 10 days.

Novantrone soon after Tysabri could be a problem. Most neuros these days won't prescribe Novantrone after Tysabri until a long washout period has been completed due to the possible adverse reactions that could result. It's the combo thing.

I hate this #$%@^&* disease. I hate the whole thing. I hate that we have to make these decisions. I hate that we have to consider every detail of every drug and what they can do to us. I hate that we have to study things we never thought we would ever have to know about the science and makeup of drugs. I hate that we have to listen to a doc who may not study and keep up on the details like we have to, when what we choose may be a life changing decision! I hate the fact that there hasn't been enough money spent since this stupid disease was discovered to find out WHAT CAUSES IT! We can send people into space but we can't figure out what eats our own brains??? Aaargh! :mad:

(sorry, my rant...it just gets so frustrating!)

But I'm thankful that we can make our own researched decisions and have great forums like this to help.

The Space business is not as advanced as you might think (I happen to be a rocket scientist) - We get there but it takes an awful lot of money and our ability to get there reliably has advanced but is nowhere close to what we expect these days from the products we use everyday.

Ditto! I also hate that 6 out of my 7 current meds all cause drowsiness and the doc can't figure out why the anti fatigue med doesn't work!

The latest count on PML cases is 46. 17 are in the USA, 26 in the European Union and 3 cases are in other places. There have been 11 deaths contributed to Tysabri and PML but I can't find any info on the latest 4 cases other than 2 were in the USA. I have no idea how many doses these patients received.

My husband keeps telling me about the cases and I keep telling him, "I want my Ty"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Until there is a blood test that tells me I may be susceptible to PML I'm not giving up my Ty.

I hope everyone is doing well.

hugs,
Shayna

Fame, no fortune...
 

My neuro and I did the media interviews today about Tysabri and the news reported at the AAN last week on vision improvement, fatigue and cognitive improvement and quality of life improvement.

It was a very long day, started at 6:00 a.m. and went until noon. I was up at 4:00! We did 18 interviews, both televison and radio, with one radio interview going out to 4 different stations in NJ and NY and a national news feed that was taped for later use.

It was interesting to see how the media side works, and my doc made a threat or two to me when he was attacked by the makeup woman. All of the folks involved were very professional and very helpful. They did it at a seaside resort that isn't open yet for the season so we had the place to ourselves, beautiful place with a beautiful day to match. I spent an hour outside sitting by the ocean afterwards and it was sunny and warm and just lovely!

It was a long day and I need a nap! Hopefully the information presented will be helpful to those who are considering Tysabri or on it.

I'm impressed RW :D
Glad you got that hour of R & R; sounds like the setting was grand :)
If it weren't for the Ty you probably couldn't have held up for ALL that !!!!
Good for you (and your neuro)
Linda

# 38 down!
No problems, no concerns.

Interesting brochure sent to me today from the MS Center Atlanta. It has a front page article about PML and Tysabri and the new assay by Dr. Stuart, the director. The MSCA is one of the largest prescribers of Tysabri in the world.

http://mscatl.org/file/4.Winter2010Newsletter.pdf

Update and question - I went for infusion #25 on Fri and got a not so nice surprise. Since I am over the two year mark, my Neuro. has gone from every 3 mo blood-work to blood-work every two months. I broke into tears. (I am not an easy one to get blood from and this has been a bad year...I was not prepared for a draw.) Has anyone experienced or heard of this?
This is not a small practice, the Neuro is one that was involved in the testing of Ty and one who helped bring it back... I have seen other changes in their TY procedure in the last few mos. I understand the other changes, but this seems like overkill. Is there that much fright of PML now or another reason?