Twitter comments from an attendee at ECTRIMS PML Plenary Session
 

A few twitter comments from yesterdays ECTRIMS PML Plenary Session

http://twitter.com/neurologique

Plenary: Natalizumab treated patients who get PML have very low CD 4+ T cells and dendritic cells. Antigen presenting cells are depleted.

Plenary: The MRIs from the first post-marketing German PML patient was released yesterday and shown at plenary on PML.

Plenary:… Reduced iATP is more sensitive for detecting those at risk for PML and opportunistic infections (better than CD4).

Plenary:..Question was: iATP (intracellular ATP) is nonspecific and wide dispersion even in healthy individuals.

Plenary:…Answer:Agrees-doesn’t explain PML but is independant of CD4 count.

RW-- thanks for given Biogen hell!!! Maybe if we stay on them we will get info but it is shameless they blew off your doctor. I have an appointment with my neuro next week so I will ask her what she has heard, if anything. How much Vitamin D are you taking? Just curious. I am taking 4,000 a day (for about 5 months now) and plan to ask for a Vitamin D test when I go in just to see where I am at now.

Does anyone know anything about this CD4 T cell testing? Someone on another forum recently was talking about neuros doing this test now to watch for PML, and if the numbers got too low they were yanking the people off of Tysabri. I had never heard of this.

Based on the plenary info I linked to above, iATP was identified as a more sensitive test for identifying those most at risk for PML.

Right, I get that the latter test is more sensitive but i wanted to know if this is something neuros are testing for in their office now or is this only preliminary scientific testing? Someone on this other forum claimed it was even part of the Touch protocol which I know isn't true. But are neuros starting to do this test in their practice ?

Natalie,

I would call your neuro and make sure that he/she knows you want the info when you see him/her, to give them time to get the info. I called my neuro a week previous to my appointment and still didn't get it, so more time may help you to get the info.

I don't know much about the testing, since this just came out at ECTRIMS and I haven't had a chance to read yet. Once I digest the info I will write down my questions for my neuro and call back for answers to that AND the other info on new cases of PML.

(I REALLY hate this sutdown on info from Biogen...:mad: I hate that it's entirely possible that the only info we may get may come from their quarterly report to their freakin' investors!)

There is a test for iATP available commercially called ImmuKnow. As far as guidance on what to test for, etc, I think Biogen wants to provide the info to the scientific community for info/feedback before recommending what should be tested/how often, etc.

After being off Tysabri for 14 weeks due to shingles, colds and sore throats I was finally able to receive my infusion last Friday. I can't remember if it was my 25th or 26th....LOL While I was off Tysabri I noticed that I was getting weaker and beginning to lose my sense of balance. But, I must admit I have mixed emotions about being on Tysabri. I love what it has done to improve my quality of life. But, I do worry about PML......especially now that Biogen is less co-operative about disclosing new cases.

According to the Wall Street Journal this morning there have been 2 new cases of PML in the EU since Biogen stopped posting new cases in July. Biogen will not comment or confirm the new cases. I think it would be in Biogen's best interest to keep patients informed. Obviously, Biogen does not agree.

Ignorance is not bliss!!!!!!!! The stress of worrying about PML is not in the best interest of any MSer who is taking Tysabri. I wish I wasn't such a worry wart. Tysabri has gotten me out of a wheelchair and walking again. I'm able to play and run with my grandchildren again. Although I've never been athletic I'm able to participate in sports with them....they know to be careful because Grandma gets injured easily ;) But, PML is always in my mind.

Thamks for updating Shayna! :) It sounds like you have had a bad go of it lately and I hope that all the garbage is cleared up and you can go forward without any more illness!

As far as the PML rearing it's ugly head and no updates from Biogen, it seems that they cannot keep the news down even if they won't report to us, the patients who keep them going.

This is what a google on the subject brings up today. It seems there may have been one or two more cases since Biogen started treating us like mushrooms:

http://news.google.com/news?q=Two+ne...title&resnum=1

This is an updated chart from Pit (the husband of a PML patient overseas who blogs about his wife's experience): http://chefarztfrau.de/?page_id=716

I still haven't received any info as requested from my neuro yet, but I had a long day after working all night and did not call today like I was supposed to...(sorry for that-we're in winter prep mode here and had six cords of wood delivered and room had to be made in the yard to hold the pile! :(...it's too early!!! What happened to summer?)

I am still taking heart from the fact that despite whatever cases are rumored to have been found, that the rate of PML still appears to be below the 1:1000 threshold, and there are a LOT of us who have been on Tysabri for a long time without any signs of PML and that the benefit, for me, outweighs the risk.

Hope everyone's doing well!:grouphug:

Youtube video of a Dr reporting from ECTRIMS 2009 on the PML plenary session

http://www.youtube.com/watch?v=t7GkwSRXpXk

Riverwild, you are amazing with all the info you find :D Thank you !!!!

komokazi, I have tried to follow what you are posting but I just don't understand :o and I don't even know what plenary is :o:o

Linda