Hi Lynn,

My JCV status is negative. It's been like that for several years (knock on wood!!).

Good luck with your decision making. The other drugs don't seem that appealing to me either.

Natalie

me again Lynn
Have you given thought to getting your infusion at 5, 6, 7, 8 weeks instead of 4?
The American Academy of Neurology has stated that going for longer periods of time lessons the chance of pml-I think, I understood out of, Maybe, 400 people those getting it at longer periods of time, no one got pml It's something to think about. Maybe you can look it up-approx 6 mths ago. I am now getting mine every 6 weeks-my MRI was the same after 3mths !

My best wishes and good luck !!!!
Linda

Lyn,

I just read about a new test that can possibly stratify PML risk even better than the JCV antibody test. What this means is that positive antibody test people can be identified as greater or lesser risk than titers show.

I can't link to the article myself but it's posted in this forum thread.

http://www.msworld.org/forum/showthread.php?t=134636

Perhaps ask your doctor about this? This could be good news and help you in your decision if you can access the test.

Hey! Still here, still alive, still on Tysabri, still no new lesions, no enhancing lesions, no advance in progression of MS.

October is my month of two Tysabri infusions. I had # whatever it was at the start of the month and will have the second at the end of the month.

Life is good. I have become a Magnate in my absence...whatevah that is!

Thanks guys -

Linda - Good idea with the extended time-frames (make sense doesn't it - the more times you cross a busy highway, the more likely you are to get hit by a car).

Natalie - this was fascinating - I don't know whether this test is available in Australia yet - but I will be asking the question.

Many thanks

Logged in #49 yesterday although it took the nurse 3 tries to get the IV in! Hard to believe I've been on this drug for 6 1/2 years. Just keep plugging along....

So glad it's still working for you!!!
I wish it worked for everyone.

Hi Natalie

Multiple 'stab wounds' were the reason I decided to have a port-a-cath inserted. Since I had that put in, it is sure-fire, once only, and almost painless. No bruising, very little bleeding and much less anxiety. It's probably only a good choice if you are JCV- though.

Howdyyyy!

Still here, still on Tysabri, still doing well, no problems, no concerns healthwise, still JCV -, still only missed one infusion since May 25, 2007.

Don't know how many I am at now but it sure has gone up in cost since I started. I lost my excellent insurance, got a plan with higher deductible and copays and then got wrapped around a helical shaft and turned, with a deductible of $2500.00 and a copay of $7500.00 and higher copays on scrips. I am considering my options right now because I cannot afford that and still have a life, even with working with the hospital on payments.

My employer thinks that is affordable because they DID reduce my copay down to where they can't get nailed for charging so much we have to go on the ACA. There's also no help from Medicaid since our governor (who shall not be named by what I call him since it will get me tossed out) refused the Medicaid funding.

Where that leaves me is at the "I don't know" stage. I've reviewed my options and I STILL haven't made a decision. For me, the original Pro/con listmaker who could always decide when presented with all the options and evidence needed, it's a weird place to be. It involves many changes, leaving a job that I have loved for years, maybe leaving my home, maybe early retirement, maybe changing treatment, maybe just staying where I am until I just cannot take it anymore and then deciding. At this point, I've decided to continue in my limbo until after the new year because tax wise it gives me more options and time to decide.

So, here I am.
Hope you are all well and having a healthy start to the holiday season.

Riverwild, your out of pocket costs are outrageous I would contact Biogen to find out what they can/will do for you. I am so sorry this happened!

Linda