Oh yes, terribly. She's starting to act like she's going to miss me. I will miss her funny side... It shows once in awhile. I won't miss the rest of it. Thing is, we'll work together occasionally because her DH and I will have joint projects done out of our own locations. If I do have to spend a lot of time listening to rants from her, it will be billable at a low introductory hourly rate, lol.

It sounds like a few of the patients have had fairly good recovery which is reassuring. Hopefully it will get to the point where they know exactly what to do and can reverse all or most of the damage.

RW --Thanks so much for always keeping us updated on Ty. information. It is great to have you as a resource. It sounds like your neurologist is well connected and a good source too.

Yeah...once again...PML update June 19 shows 1 patient. out of USA, 34 infusions, no further information available at this time. I'll let you all know what I find out...

So I got some info today. This is information available to your neurologist and any other licensed physician if they email or talk to Biogen through their medical professionals line. It is not available to the general public or Tysabri patients anywhere that I could find.

I'll just paste what I have.

There is a chart circulating so you can go to it and figure out who is who when it comes to patient # system being used. http://pietynorwit.com/Tytable.htm

On this chart patient #4 is patient #1 after return to market, and is numbered 4(1) All of the patients listed below are post trial patients, so the number they are identified by is the one in the parentheses.

Case nos. 5, 8 and 9 all had novantrone prior to starting Tysabri. 8 and 9 were both in Sentinel, but in the Avonex plus placebo group, and likely had earlier access to restarting Tysabri than the general population.

As previously disclosed, case no. 2 was previously treated with azathioprine, and case no. 3 was previously treated with methotrexate (the latter was the US patient who died after her family reportedly decided not to follow the PML treatment protocol).

Case no. 4 had no apparent risk factors, and was described as of February 2009 as being "communicative."

Case no. 6 also had no apparent risk factors, and as of April 2009 required ventilator assistance. This appears to be the one PML patient in the poorest condition, and the only patient without apparent risk factors to contract PML after 30 months of Tysabri treatment.

Case no. 7 also had no apparent risk factors, and as of May 2009 was described as alert and ambulatory (able to walk 100 feet).

If I hear any more information I will post it here.

Riverwild,

Thanks for the detailed update on the cases and where they stand. Would be nice if they also communicated what courses of steriods if any they were given during their Tysabri treatment period to see if that had any effect.

Chris

Chris, I haven't got any information on steroids administered to people who are on Tysabri who develop PML.

I know there are people here who are or have been on Tysabri and have been determined to be in relapse who received a course of steroids.

As I understand it, as long as MRI shows lesions and inflammation consistent with relapse, a course of steroids may be administered. If ANY lesions are inconsistent with MS lesions (MS lesions are perpendicular, PML lesions may be blotchy, in unusual areas of the brain away from previous lesions, or may be at odd angles from normal MS lesions) steroids should NOT be administered.

I do know that IF a person has PML, is treated with plasmapheresis, and shows IRIS, steroids are part of the treatment for IRIS.

This was one of the problems my neuro talked about, that there are a lot of neuros and radiologists who hadn't ever seen PML because it was almost always seen in AIDS patients who were treated with strong immunosuppressants, but all AIDS patients who are on drugs don't develop PML. ( I went right to the head of my radiology department because he reads my MRIs and asked him straight out and got a very informative lesson in PML and MRIs.)

What we need is a test to check for JC virus, an easy one. Right now it appears that it's a combo of tests checking urine, blood and CSF. 80-85% of the population carries JCV in their kidneys. It's when it's activated into the blood and CSF that it becomes a problem, and in many people it never makes it to the brain.

I just got my MRI results back after having infusion #12. Still no changes--no enhancement and no new lesions. I almost had a serious anxiety attack since it took them a week to get back to me unlike previous MRIs. I finally called and demanded the results! So I guess the Tysabri is working extremely well.

I have also noticed that my fatigue level has improved significantly, back to pre-MS and pre-mono days, and my ability to tolerate heat is almost normal now. It's been 100-102 degrees here for days and I've been outside walking around, traveling, running errands etc. and have had no problems. Wow!

Hooray Natalie!!

That sounds like my situation. After about a year or so I realized I was feeling a lot better. It happened gradually so it wasn't all that noticeable. I've also had good MRI's all along. I feel very fortunate.

Yay Natalie!

Isn't it GREAT to get that report in your hands and read "NO enhancing lesions, NO NEW lesions"?

I've actually got provigil and baclofen stacked up in my med locker now, because things are so good I barely need them anymore!

I'd comment on the heat thing but you all west and south of Maine are hogging it all! We have had rain for 25 days now. It's been cool and clammy, still below 70 today!
I keep praying for a hot sunny day!

Another Tysabri PML confirmed.

June 23, 2009, Outside of USA, 30 infusions

http://phx.corporate-ir.net/External...R5cGU9Mw==&t=1