well agate that is disturbing news. i hope they can get to the bottom of this.
as for me, i finally heard from biogen and i told them to place my tysabri on hold until i get in to see the mayo clinic, as i am unimpressed with barrow's ms clinic, and i figure its been 5 months already one or 2 more without treatment isnt going to kill me. plus i'd like to try that oral med first, if my insurance will cover it...

If anyone has found out how many infusions the Nov 2 - Dec 2 pml cases have had please post. I have tried every way I know to find this out with no success
thanks
Linda

The only info I have found concerning the new PML cases was that case #76 was in the USA and had received 34 infusions. I found that info here:

http://chefarztfrau.de/?page_id=716

I know that the chances of getting PML increase with the number of doses. That's very obvious from the chart in the link above. But, I don't know what Biogen is saying about the ratio now. It must be greater than 1 in 1,000.

I called my neuro to see if I could get an appointment before the end of the year but she's taking 3 weeks off so her office is closed. After talking to the neuro who did the JCV test for me I really want to know why she has never had me tested for CC4, Tysabri antibodies and also for Tysabri levels in my blood. Some neuros do this routinely for their Ty patients others don't. I would like to know the reasoning behind whether or not the neuros do the extra blood draws. The oncologist who administers my Ty infusions told me that he can only test CBC, electrolites and see if there is any liver problems. It's up to the neuros to handle anything else concerning m.s.

take care everyone........tr to have a great week

hugs,
Shayna

shayna, the number 34 that you see after case #76 on the chefarztfrau list means that it was the 34th case in the USA. No information about the number of infusions for the new cases has appeared yet on that site.

Thanks agate.....I didn't realize that. I guess we'll simply have to wait until Biogen releases the info

hugs,
Shayna

Well I got number #25 today. No problems and no side effects this time. Yeah! I was in and out--they were extra efficient. I didn't have time to feel crummy for the usual day or two so I'm glad it felt like nothing! I have too much to do before Christmas Eve as we are off to Italy. I was feeling anxious and teary today and realized it was the whole PML fear. I had set my ultimate stopping point as #24 and so maybe realizing I am going over that caused some anxiety. Anyhow hope everyone has a nice holiday!

I need a favor. My WBC has been off the charts and today at dr's office I had him dig in records and turns out my WBC was 10 (high but now its 20) the month BEFORE starting Ty (Nov 2009). Biogen didn't log bloodwork during trial (amongst every other co ive asked) so can you please tell me if any of you have elevated wbc? Thanks. After all, it's what's eating us up right?

ed

EddieF, I hope somebody will reply to your question.

There has been some additional information on the PML cases:

The chefarztfrau Website, which seems to have access to internal sources, is listing 3 more PML cases:

#80 - Female, 29 months on Tysabri, Germany
#81 - Female, 34 doses of Tysabri, USA
#82 - Male, 50 doses, Poland

There is added information for cases 75-79:

#75 - Female, 33 months on Tysabri, Germany
#76 - Female, 49 doses of Tysabri, Hungary
#77 - Female, 49 doses, USA
#78 - Male, 25 months on Tysabri, Germany
#79 - Female, 24 months on Tysabri, Australia

http://chefarztfrau.de/?page_id=716

Told neuro today switch me back to Copaxone. Tomorrow will be my last Ty for who knows how long. I'll do C for a few months, hopefully my white blood count comes down to earth, then i'll try Novantrone or Gilenya. He said Gilenya & Novantrone are kinda the same. I chose C as a bridge to Novantrone or Gilenya. I'll let ya's know if white count comes down in a few months. Tomorrow will be my 14th? dose of Ty.

Hi Ed!
Do you have the WBC done before or after infusion?
I ask because when my WBC is done after infusion, they are in the high range. The doc explained that it will be higher than normal because the WBCs are circulating in the bloodstream but cannot attack the myelin by crossing the BBB because very few of them get through, so they are milling around with no place to go until they die off or find another infection/inflammation to fight. They come back down as the month goes by. Tysabri also attacks the WBCs when they are immature, killing them off before they can cause any damage to the myelin.

If your WBCs are high right before you have your infusion I would be asking questions about other low grade infection/inflammation, such as diabetes, arterial disease, low grade infections in other parts of the body, etc. Even gingivitis can cause high WBCs because it is a chronic inflammation, although a person may not feel ill from the infection. Any disease process that causes inflammation will increase WBCs.

This is why the big long fact sheet that is included every time you get anything about Ty includes information about infections, because in some people, Tysabri lowers the WBC to levels that don't fight infection /inflammation as fast as they would if there was no Ty in the system.

In my case, the WBCs are never above the high normal range, nor are they below the low normal range. My doc says it's because I am disgustingly healthy and he can't make any money off of me because of that...