this was posted yesterday. Biogen is hoping they will have a blood test by the end of the year for PML. Interesting.

http://www.forbes.com/feeds/afx/2009...fx6214393.html

Ahhhhhh...

# 24 down!!

No problems, no concerns (except for the FOUR misses before the nurse hit the vein on her last try before I called in a phlebotomist!)

Saw my neuro afterwards and he asked me if I was ready for a drug holiday yet!!!

I was all confused and said...um...NO? (this is the guy who said he isn't in favor of drug holidays)

He started laughing and said he didn't think I would want one

I told him the one I missed was the only holiday I was planning to take!!

We talked about the Biogen reports and he told me that he was informed that the patient who died (49 y.o F, methotrexate prior to Tysabri with last Metho TX 4 months before infusion) and her family had refused all further treatment after she was diagnosed with PML.

He stressed the importance of being vigilant about any changes in thought process, affect, vision, etc and that he wanted a call even if we thought it was "nothing"
Since the old man was there with me he told HIM that he could call too since I seem to have a problem admitting it when something is wrong with me...(LMAO! That was a shot at me for the appendix!)

In short, it was a VERY good day!

I did let him know that I had noted increased stiffness and fatigue, but could not put it down specifically to missing the last infusion since everything else was whacked out at the same time!

Hope everyone's doing well!

Hey RW -- glad to hear you are back to the Tysabri. I think I told you that my neuro does not recommend drug holidays because of the antibody issue (and the researcher who came up with this idea is one of her colleagues in the same clinic!) Anyhow, congrats on #24.

For everyone else -- more info on Tysabri, PML etc. that was published yesterday.

http://www.bloomberg.com/apps/news?p...CpKTo&refer=us

More blogging from the husband of the patient diagnosed with PML about her treatment and recovery-

http://chefarztfrau.de/?page_id=418#comment-22427

translated to:

Am 8. April 2009 um 08:42 Uhr
Hello to TysLand.
Due to the many questions here very briefly and just a little info re. my wife:
According to the circumstances she is doing quite well.
It's all a bit different than expected - physically she is now better than I had expected,
but mentally not quite what I wanted it to be. But we're working on it ;-)
Learn more from me at Easter, I `ll write then because I will have a little more time.
Also, I had a nice conversation with representatives of the manufacturer of tys.
I was pleasantly surprised - more on this also in the coming days.
Happy Easter to you all, avoid any stress with inviting relatives, and so.
You all should prefer to recover and relax, now is the time to do so.
Pit

Hallo nach TysLand.
Auf Grund der vielen Anfragen hier ganz kurz und knapp Info zu meiner Frau:
Es geht ihr den Umständen entsprechend ganz gut. Es ist alles etwas anders als erwartet - physisch doch nun besser als es sich anbahnte, dafür psychisch noch nicht so, wie ich es mir wünschte. Aber wir arbeiten daran
Mehr dazu schreibe ich über Ostern, da hab ich bissle Zeit dafür.
Auch hatte ich ein nettes Gespräch mit Vertretern des Herstellers von Tys.
Ich war angenehm überrascht - mehr dazu ebenfalls die nächsten Tage.
Euch allen schöne Feiertage, macht kein Stress mit Verwandte einladen und so. Erholt euch lieber- jetzt ist Zeit dazu.

It will be interesting to hear what he has to say about her recovery and his communication with Biogen!

Hope everyone's doing well!
Fine here, looking forward to spring! I'm working too much, but that's nothing new!