This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.ccjm.org/content/78/Suppl_2/S33.full

A bit of info regarding PML and how it relates to MS patients on Tysabri. It may all be well know, but5 it answered a few of my own questions so I thought I would share.

Very helpful thank you. Since Tysabri cessation 20 months ago I have had symptom progression month after month. I have gone from playing tennis and running to full time cane use with difficulty. I'm considering a return to Tysabri as it managed my MS well for almost 4 years. I stopped treatment because I had slight symptom progression and JCV positive. AHSCT and 20 months later I'm still progressing.

From the data in this article it appears my chances of PML are 1:94 based on my history. Not great odds but could be better than the alternative IF Tysabri is successful stabilizing my MS or improving EDSS. To date I'm unable to find any information regarding efficacy of either after a Tysabri "holiday".

Although Biogen takes a beating I must say they were responsive to my inquiry related to risk of PML and discussing my case with me and my Neurologist. I had responses and follow up from people at a Director level. It did take two attempts but I did get through.

Thank you again.

Mention the word "PML" to Biogen as it relates to Tysabri and you will get their attention immediately!! It is the biggest reason that expected sales of the drug have never come close to estimates.

Harry

They were clear that I had been off Natalizumab for almost 2 years so PML risk was not the reason they responded. I'm considering resuming Tysabri and that's why they called ($50k/year) in new revenue.

$ 50k a year gives them even more incentive than PML!!

Harry

The reason I passed on the offer of this med was the PML but ALSO the unexplained/uncontrolled rebound and stopping treatment.

Thanks, Cure. The article was very informative, but the quote that struck me most was finding out that there was danger even after 6 infusions of Tysabri:


Check out the sentences I made bold.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

This is the kind of info that Biogen doesn't publicize for obvious reasons. One can also come down with PML even if you test negative for the JC Virus. Tysabri is one very powerful drug that alters the way your immune system works. While some patients avoid the serious problems, others can encounter all kinds of issues.

Harry