Hi Natalie!
Sorry so long in responding, lots going on.

The PML news I heard was the same as Komokazi reports, that BIIB and Elan are compiling info that may lead to better treatments for PML. It seems that JCV has more than one genotype, and that only people showing a certain genotype may be developing PML Also said in one of the meetings that only approximately 50% of world population carries JCV, not the 80% previously reported. It's possible that your report about the doc who was doing the blood tests on Ty patients is involved in this so anything you can find out will be helpful.

I don't know anything further yet. I haven't been up to speed on my usual reading since summer has overtaken me (now that it has sort of stopped raining!)

The remyelination study that was reported July 4th was the study that they released the abstract on for AAN conference back in ?April?

I think I've been remyelinated!:D I can't stop! I have to give the credit to Tysabri since nothing else has changed in my life. I'm up, I'm awake, I'm moving and busy trying to catch up on all that stuff you can't do when it's pouring out! There are days when I don't need Baclofen OR Provigil at all, and for me that is saying something! I just haven't needed to take them!

Hope all is well with everyone and that you are having some sun too!

River,

I think Biogen's and Elan's efforts are to try and identify risk factors for PML. It would certainly make patients feel more secure with the drug if they knew they didn't have PML risk factors.

We now have the 11th case of PML in a person from the U.S. I didn't see any announcements of this on the forum in earlier listings. I posted this exact post on a separate thread.

This was published a few days ago. The article says that for those on Tysabri for 12 and 18 months the risk is still WELL below one in 1,000. One analyst from Deutsche Bank claims the rate is actually approaching one in 1,000 for those on Tysabri for more than 24 months. 43,000 people are now on the drug.

http://online.wsj.com/article/BT-CO-...24-714686.html

Another article reads "The PML incidence remains below the long-projected risk of one in 1,000 patients developing the infection. After the previous case, a Jefferies & Co. research note last month put the revised PML incidence at one in 2,490 after 12- month Tysabri therapy; one in 1,400 after 18-month therapy; and one in 680 after 24-month therapy." Kinda scary.

http://www.nasdaq.com/aspx/company-n...tysabri-update

This is even more worrisome to me.

"Biogen said on its earnings conference call earlier this month that it would in future communicate new cases by word of mouth to physicians and patient advocacy groups."

http://uk.biz.yahoo.com/24072009/323...tion-case.html

BUT....I will still stay on my Tysabri for now.

question for you Tysabri uses about the infusion
 

I've gotten my past 2 infusions at a new place and I think they may be doing the saline drip after the Tysabri drug itself a little bit differently. After your medicine goes through over 1 hour, how long do you all get the saline drip for?

Mine is anywhere from 10-20 minutes I think, depending on how fast the drip is moving. Then I have to sit and wait for the rest of the hour before they check me for rash and my vitals.

My infusion center runs a bag into me at TKO rate, for an hour.

1:00-2:00 -Q&A, vitals, call pharmacist to mix and deliver, Set up and start IV with normal saline, pharmacist delivers, bag is checked for drug name and mixture to ensure it's mixed with normal saline, Tysabri hung and started.

2:00-3:00- Tysabri runs, vitals checked once or twice, chat with nurses, watch TV, sleep, check time repeatedly to see if it will go faster if I keep checking...

3:00-4:00- Saline drip for an hour, check time every 5 minutes and ponder bribing nurse after 1/2 hour, walk around infusion center, look for candy on counter at nurses station, look for new magazines in piles of old magazines...

4:00- Vitals checked and FREE! :yahoo:

Just had #14 today. Slowing down the infusion to 2 hours followed by 1 hour of saline drip is the TICKET! Just a hint of nausea and mild fatigue which I can handle. Nothing else!!

After some complaining and pushing and cajoling I finally found the perfect combo! :yahoo:

Other than that, not much else to report. Plugging along and waiting for summer to be over. It's 100 degrees today.

OH WAIT! I had to come back and add something I forgot. Last night I ended up in the E.R. with minor abdominal pain. I woke up in the morning with the pain but kept thinking, oh it's probably nothing. I finally decided to go in and get checked just to be safe. At first they thought I might have appendicitis! But it turns out I had a ruputured ovarian cyst. Everything is fine.....But RW, I couldn't help think of you and your appendix awhile back!

Ouch Natalie, I had that happen once and I collapsed on the floor while working out. That was a few months before I had a hysterectomy (another story, lol)

I'm really glad your infusion went better this time. :hug: I hope your ovarian cyst won't be giving you any more pain. It makes me queasy just thinking of that. :o

I only get a hypo of saline before and after Tysabri. This is in the hospitals both CO and AZ.

OUCH on the Ovarian cyst, Natalie! Hope you are done with excitement for awhile!

Do they just leave it alone when it ruptures? I ask because when they did the CT scan and xrays looking for what was ailing me, they noted an ovarian cyst and I wondered if that was causing my problems. Funny how they could see that and NOT the appendix! The tech said OC's are normal in "women my age" *SLAP!* Good thing I was high on morphine!

I tell ya, I cannot wait for menopause! Yesterday I went out on my lawn again and screamed "COME ONNNNNNNNNN MENOPAUSE!!!" I'm 50, had it all since I was 9 and I am just freakin' DONE with it all!

Linda, I wonder why the procedure is so different from one infusion center to another? My infusion center won't let me out until that hour is up and keeps the saline IV running the whole time!