Infusion #15 today
 

I had my 15th infusion today and it went well. :) My doctor came in to check on me just as the nurse was going to put the IV in. It caused her to hesitate because he was standing there watching her.

So he said, here, let me do it, I love to do these. He put the IV in perfectly on the first try! He was giving the nurse pointers all along, since he's been involved with MS treatments and infusions for decades. I think she may have been a bit embarrassed to have an impromptu mini-lesson.

The other nurses there have told me that newer nurses often cannot insert IV's easily because they either don't have to in hospital settings, or they don't have the opportunity to do it often enough in their training.

Anyway, we were out of there by 1:15, stopped for lunch and got home early. :)

Progressive multifocal leukoencephalopathy (PML) has reared it's ugly head again, this time with two people on Tysabri monotherapy.

Attached is the link to the in-depth discussion on NT, which others contemplating Tysabri may wish to consider:

http://neurotalk.psychcentral.com/thread51141.html

Cherie

While neither of the new PML cases were in Ireland it looks like there is some concern that it is not being properly monitored there. There are still unknowns with these 2 new cases -- maybe more info will come out in the next weeks about other countries in the EU and their protocol.

http://www.irishtimes.com/newspaper/...41.html?via=mr

Just thought I'd throw this out here..... :)

I'm sorry Natalie (and others), I really didn’t mean to stir up conversation about this event here, in the “Information and Check-in” thread. I was only meaning to post the link to conversation that had occurred/may still occur.

In response to your point though, we have the same concern in Canada. It’s probably true of many countries with a “universal health care” system, as access to diagnostic testing is limited and prioritized. That might seem like all the more reason to NOT approve the drug in our countries to begin with . . . however, all that REALLY means is that they might not be able to catch (diagnostically) the PML in timely fashion to save people from death. It isn’t going to change the fact that people may get PML (in any of our countries) though.

As Cheryl pointed out in her last posting (on the above thread):

According to the conference call Biogen held, the neurologists in these two cases were extremely responsive to the patient changes, even though the testing showed a false negative reading. That attention to patient care is probably what saved these people (at least momentarily).

At the end of the day though . . . I guess it’s kinda’ like saying a person can’t be a “little bit pregnant”. By the time they suspect PML in a person, whether diagnostically or through due diligence . . . the person HAS PML already. The only thing they can do is try to mitigate the damage by initiating testing, and then trusting their gut even if the tests show a false negative.

Cherie

Not meaning to stir the pot either, but this just popped up here on NeuroTalk in Health News Headlines.

"Patients with multiple sclerosis who are taking the drug Tysabri are not being properly monitored for serious side effects because of health service budgetary cutbacks, a leading neurologist has warned..."

http://www.topix.net/med/neurology/2...ed-says-expert

More information about these two cases can be found at Biogen's website by clicking on their SEC 8K report.

Have any of you spoken with your neurologist regarding Biogen's report of the two new cases of PML - and what was your doctor's response regarding continuation of Tysabri?

I don't know too much about universal health care systems and the quality of care. But, you are absolutely right. People still have a risk of PML. And that is something a patient needs to take into account before going on Ty. (weighing the risk v. the benefit in the face of the facts, or at least as close as you can get). A patient takes a calculated risk in deciding to go on the drug. The protocol is not designed to prevent you from getting PML. The only thing you can do is mitigate the effect of the risk if it manifests itself. It sounds like at least one of the doctors trusted his gut (and made the diagnosis based on the MRI and clinical signs) and did the plasma exchange on one of the cases very early -- this is the person who is stable, at home, and ambulatory. A protocol is better than NO protocol and I feel relatively confident in the ability of my MS Clinic to catch it early. But I thoroughly acknowledge there is still a risk of getting PML. And I guess you could say there is a risk that my clinic might not catch it early. But aren't there all kinds of risks in life? To each his own...some are more comfortable with risk than others. The nice thing is we have the choice.

I didn't speak with my neurologist but I spoke with the head research nurse at the clinic where they have 150 people on Tysabri. In fact, this clinic had one of the 3 initial PML cases in the early Tysabri trials--it was the guy who lived, albeit very disabled. She and the docs have been discussing it and will meet next week again. They don't intend to pull anyone off. I asked about the "12 suspected cases of PML" that were reported. She claimed the clinic had been in touch with the FDA and that in fact these cases were not PML. Doctors are just being hyper vigilant which can lead to over reporting. I can't say I know this to be true. It's reassuring to hear her say this but you can't know for sure. I imagine there is a lot of hearsay and misinformation floating around as well.

Maybe we should move this discussion back to the Tysabri link announcing the 2 new cases of PML that was started yesterday? It's good of Cherie to post the link to that thread here so people can have access to it. But I don't want to hijack this thread. What do you all think?