Don't have a link to a new story, but Biogen/Elan have talked about extending the Tysabri indication to include secondary progressive MS in their investor presentations. (Look under Biogen filings with the SEC)

May also want to check AAN 2010 website where you can look at scientific abstracts where doctors report on results they have observed in small numbers of secondary progressive patients who have received Tysabri

AAN next will most likely provide updated Tysabri usage and PML numbers.

Update from Irish Broker Davy - “For Elan/BIIB, the focus this week is to demonstrate that its JC virus assay is being validated successfully – indeed, prior JCV infection has now been found in 13 of the 13 PML cases investigated (it had been 11). ” Cases had to have pre-PML blood samples available to be included in this assessment.

JC Virus Antibody Assay Clinical trials at www.clinicaltrials.gov now show the trials as recruiting. No word yet from my Neuro who said she was going to participate in one of the trials.

"Large Body of Data on Tysabri to be presented at Annual Meeting of the American Academy of Neurology"

http://www.marketwatch.com/story/lar...k=MW_news_stmp

Highlights ability of Tysabri to improve sustained visual function, disability, overall quality of life, cognition and fatigue. Also included is Preliminary Evaluation of Pregnancy Outcomes among women exposed to Tysabri from the TPER Registry, and the news on JCV/PML studies.

Interesting stuff!

I had infusion #31 eleven days ago. We left for California to visit with the grandchildren after the infusion and arrived home 2 nights ago. I saw my neuro today. I've been sleeping since we arrived home....the little ones really keep me hopping....LOL

My darn fungal rash will not go away. But, my neuro isn;t concerned since it isn't systemic. It itches occasionally. But, it appears to be slowly improving. The only problem I had with the infusion was a hematoma where the needle had been inserted. It was huge and hurt like the dickens for several days. But, it's almost gone now and is no longer a problem.

I've decided that waiting 6 weeks between infusions isn't for me. I can feel the difference by the middle of the 5th week. So, I'm going back on my every 4 weeks schedule. My neuro and I discussed the possibility of having 1/2 a dose every 4 weeks but I really don't want to do that. I really feel I need that full dose and Ty has been so good for me. I don't worry about PML...my husband worries enough for the both of us :) I'm trying to stay up to date on the info but so much of it is confusing to me :(

I did read this morning about the high number of transplant patients who come down with PML......1%. I have no idea who many transplant patients there are but the would be equal to 1 in 100!!!!!!!!!!!!!!!!!!!!!!!!!!

Take care everyone. I hope you're all doing well.

hugs,
Shayna

Going in for another infusion today. According to the MRI since starting Ty I not only continued to grow new lesions but now I have a few that are showing up as active. Been over a year since any of them have been active with the contrast. So I am destined to another 3 rounds of Ty before we do another set of pictures and if there isn't a huge change then she is puling me off of this and sending me in for clinical trials because I refuse chemo.

If this is the miracle drug, why do I feel like I am playing russian roullette every month?

Sorry your MRI is showing new and active lesions:( How have you been physically ? Wondering if Ty was ever the med for you :hug:
After the first couple months physically I did better, progression halted and my MRIs showed no new or active lesions. These are the reasons I have been such a Tysabri cheerleader.
Best wishes,
Linda

You know I hear about so many people doing great on this I was actually kind of excited when we started. but it's been 5 months now, and I have more sx now than I did when I started. But I do like the fact that I don't get the nasty flu like stuff with it. The only side effect I have really had from it is feeling completely drained of energy after the infusion. Which is normal, and easily remedied with a long nap.

Legzz,
I am so sorry you are having more problems. :hug:

Having your MRI show more active lesions may indicate that Tysabri isn't working for you or it may be that you are having one heck of a relapse. Everyone's different and no one drug works for everyone. If it did we would all still be on the first drug we chose, because that drug would have worked.

Copaxone didn't work for me and I remember how utterly frustrated I was, dealing with relapse after relapse, having a neuro who couldn't do any more for me than offer steroids or a drug change, advising me one month to stay on Copaxone and the next trying to get me to go to another drug and then saying give Copaxone more time, while waiting and fighting for Tysabri to come back.

Tysabri worked for me, but I know a lot of people who could not tolerate it, developed antibodies or did not respond. Some move to interferons or Copaxone, some go to other drugs that are on the market today, including Cellcept and other chemo drugs, some are off everything by choice or due to re-classification to SPMS or PPMS, some are trying alternatives like LDN, CCSVI, etc, and some are in trials for new drugs.

I know that someday Tysabri may stop working, or something else may happen and I may have to change course. Until then, I'm dealing with the hand I was dealt and make my choices after careful consideration of my options. I'm just grateful that I have had good results and a long relapse free time to breathe. All my symptoms are not gone. I treat them with more drugs. I was med free previous to my diagnosis and now I am a walking med cabinet, with supplements and drugs, and a tupperware cup and cover always with me to haul them around because they help me maintain my QOL.

I truly hope things get better for you whether you stay on Tysabri or choose another path. Don't lose hope. There are other drugs in trial right now showing efficacy and good responses. If you want more information look at the results being presented at the AAN conference this week. The information will be reported in the news for the next month or so following the conference, but there's usually something in the news every day this week.

Leggz, I'm so sorry that Ty doesn't appear to be working for you. There are so many new meds that will be available soon. Don't give up hope. I'm keeping my fingers crossed that you'll soon find the right one for you.

hugs,
Shayna