This Is MS Multiple Sclerosis Community: Knowledge & Support

If I thought this drug actually worked I would consider it despite the risks but the fact it may or may not work and it doesn't seem to prevent the illness from progressing enough (for my liking) I daren't take it.

Yes, one more death increased the number up to 39...

Biogen have released the figures for December for cases of PML and deaths caused by it in Tysabri patients with MS.

As of December 1, 2011, there have been 193 PML cases, of which 112 have been in the European Economic Area (EEA), 71 in the US and 10 in rest of world (ROW).
39 of the 193 patients with PML have died.

In 45 natalizumab-treated MS patients who developed PML and in whom serum samples were available 6-187 months prior to the onset of PML, all 45 patients had anti-JCV antibodies detected.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1905

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That leaves 154 patients with PML that didn't die. These folks have roughly an 87% chance of becoming moderately to severely disabled from the PML.




NHE

Has anyone seen if the risk ratio for Tysabri users getting PML has been changed by Biogen? Initially the risk on the label was shown at 1:1000 but a revision several months ago saw it up to about 1:500 after 2 years of use.

With zero incidence of PML ion the 1st year and Canadian Medicare (screwed-up system) not offering to cover Fingolimod unless you've been on a certain number of other drugs for a certain amount of time, I'm trying Tysabri for a little while. So far the effects for me have been amazing.

Meanwhile, I know someone whose been on it for 17 months, but she's had NO help from it. If I were her, I'd have dropped it ages ago.

For me, though, I think I'll stay on Tysabri as long as I continue to test free of the JC virus. I'm feeling good, I'm walking so much better I've put my cane away, I'm exercising more energetically... With effects this good, it's worth a small risk.

Besides, who knows what another year will bring? Maybe by month 12 there will be a better option, or more information about a different treatment.

Being on Tysabri for that length of time would have cost approx $ 65000-$ 70000 and that's a conservative estimate. And you say she is getting no benefit from using the drug!! It would be interesting to see why her neuro would keep her on the drug. Don't suppose the doc would be getting any kick backs for prescribing it? No, what am I thinking!!

8 new cases of PML have been reported, bringing the total to 201. Don't know if any more deaths are involved. Perhaps RuSmolikova can provide additional info in that area.

Harry

3 more patients with PML have died (total 42)...

Tysabri's sales dropped in the 4th quarter of 2011 and also in January 2012. With efficacy at around 40%, (remember when we are told it was 67% during the clinical trials) the continuing increase of PML risk, monthly cost including infusion and the new orals on the market, it isn't surprising that this is happening.

Harry

Where was the 40% efficacy reported?

This is one link but I have read similar reports in more detail on other sites which I have not recorded.

http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1768

Harry

In Quebec, if the drug is in the 'exceptions basket' - and tysabri is - you pay a maximum of $962 out of pocket after whatever insurance covers, and then the province covers the rest. She'd not paid more than $1,924 at that point. I don't know if she's still on it.

Bad news again:

"As of March 5, 2013, there have been 343 confirmed cases of PML worldwide (121 in the US). 79 of 343 (23%) of the patients with PML have died.

As of December 31, 2012, approximately 112,200 patients have received natalizumab in the post-marketing setting worldwide".

http://chefarztfrau.de/?page_id=716

It would be interesting to know if these 12 additional cases of PML from last month had been tested for the JC virus earlier. Despite Biogen's announcements that they are getting a handle on controlling PML with testing, the monthly increases continue to rise.

Harry