A little more data

"So far, 19 cases have been detected in Europe, 10 cases in the United States. Two other cases have been detected elsewhere, according to Biogen officials. "

Also 8 of the 31 PML Patients have died.

The infusion center I go to has 10 recliners for the patients receiving chemo or Ty. I don't know if they infusion anything else......they refer to it as "the chemo room". The drs are oncologist. My Ty infusions cost between $5500 and $6000 per infusion depending on whether or not they draw blood and I talk to the dr. I'm lucky that I only have to pay the $25 co-pay for a visit to a specialist. But, my monthly medical insurance is $900 It's hurting us financially but I refuse to give up my medical insurance. They can't kick me out because this is covered under my husband's plan and he is "grandfathered" into their insurance policy If I give this up I'm not sure that any other insurance will take me. Ty is expensive!!!!!!!!!!

When I went for my last infusion there was a Ty patient there that I had not seen in a very long time. She told me that she couldn't afford her medical insurance last year so she had to go without the infusions. She's back in a wheelchair now She's really hoping that once she's had several infusions she'll be able to walk again. Prior to having to stop the infusions she had been on Ty for 2 years.

My next infusion is scheduled for February 19 because I'm trying to wait 6 weeks between infusions. I'm hoping it will decrease my chances of getting PML. The fact that there are now 31 confirmed cases does not give me a warm fuzzy feeling. I hope they have that assay available soon!!!!!!!!!!!!!!!!!!!!!! But, if I test positive I'm going to hate giving up my Ty.....LOL

I hear you! 31 cases is a lot to handle mentally, especially since we only had 13 supposedly in September. I am also anxiously awaiting the assay test.

I go for #19 on Monday after 8 weeks break. I'm taking prophylactic antibiotics (Cipro) around the time of the infusion. Cross your fingers that I don't get UTI #5. The only thing I have noticed after 8 weeks is the vision in my left eye is only slightly less sharp (that was the optic neuritis eye) and maybe the balance is a little bit more off but other than that everything seems fine. My energy level has not gotten any worse. I will tell you that my depression has gotten WAY better which makes me wonder if the Tysabri has been causing depression as a side effect.

Still, I am sooooooo glad I went on this drug.

Biogen and reporting on Tysabri numbers-
NEW YORK (Dow Jones)--Biogen Idec Inc. (BIIB) will communicate with doctors once a month on the occurrence of new cases of a rare brain infection in patients using its multiple sclerosis treatment Tysabri, as the biotech strives to find the right balance in keeping the medical and financial communities updated on that important number...

I think we played a part in educating Biogen on this one! The article I have is for subscribers only. Drop me a PM for the full article.

There's also this thread:

http://neurotalk.psychcentral.com/thread106605.html

I had infusion #19 today (after an 8 week break). The slowed down infusion (2 hours instead of 1) is still the way to go for me. I am having relatively few side effects from my infusion which is nice. My eyesight went back to being really crystal clear sharp again!! Strange, huh? It had started to blur up a little over the 8 week break. Anyhow, if I don't get a UTI this time we may go to 6 weeks in between infusions. I'm not sure I want to go back to every 4 weeks for fear of PML and UTI's. It's all still play it by ear.....

That's great news about your vision, Natalie! It's nice that they're willing to be flexible about giving you breaks from the infusions as needed.

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There is an article in Motley Fool telling how to get PML updates:

http://www.fool.com/investing/high-g...do-is-ask.aspx

It seems that ordinary people (non-MDs) will have to ask for the PML updates every month from Biogen's investor relations department.

Glad to hear it went well, Natalie!
I noted some lessening of muscle control of my eye when I had the break due to appendectomy last year, along with blurring. It just proved to me yet again that Tysabri actually has a beneficial effect on symptoms for me!

Thursday is #35 for me.