PML info in regards to MS treatment

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

PML info in regards to MS treatment

Postby CureOrBust » Sun Jan 20, 2013 1:54 am

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.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Advertisement

Re: PML info in regards to MS treatment

Postby KMG » Tue Jan 22, 2013 10:49 am

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.
KMG
Getting to Know You...
 
Posts: 10
Joined: Tue Jan 10, 2012 12:29 pm

Re: PML info in regards to MS treatment

Postby HarryZ » Wed Jan 23, 2013 6:47 am

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
User avatar
HarryZ
Family Elder
 
Posts: 2557
Joined: Tue May 25, 2004 2:00 pm
Location: London, ON, Canada

Re: PML info in regards to MS treatment

Postby KMG » Wed Jan 23, 2013 9:10 am

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.


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.
KMG
Getting to Know You...
 
Posts: 10
Joined: Tue Jan 10, 2012 12:29 pm

Re: PML info in regards to MS treatment

Postby HarryZ » Wed Jan 23, 2013 9:28 am

KMG wrote:
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.


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
User avatar
HarryZ
Family Elder
 
Posts: 2557
Joined: Tue May 25, 2004 2:00 pm
Location: London, ON, Canada

Re: PML info in regards to MS treatment

Postby CureOrBust » Thu Jan 24, 2013 12:42 am

Harry wrote: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.
The reason I passed on the offer of this med was the PML but ALSO the unexplained/uncontrolled rebound and stopping treatment.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: PML info in regards to MS treatment

Postby euphoniaa » Sun Jan 27, 2013 11:26 am

CureOrBust wrote: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.

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:
Natalizumab-associated PML has not been observed with therapy of 6 months’ or less duration. After 6 months of natalizumab therapy, new MRI lesions are rare in patients who are negative for neutralizing antibodies. A new MRI lesion in such a patient should be considered suspicious for PML. Our standard protocol is to check for neutralizing antibodies at 6 months in all patients treated with natalizumab. Symptoms of PML develop in affected patients whose duration of therapy ranges from 6 to 81 infusions. Symptoms often develop well before PML is diagnosed.4,5


Check out the sentences I made bold. 8O
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 except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Volunteer Moderator
 
Posts: 701
Joined: Sat Jul 15, 2006 2:00 pm
Location: midwest U.S.

Re: PML info in regards to MS treatment

Postby HarryZ » Mon Jan 28, 2013 7:18 pm

the quote that struck me most was finding out that there was danger even after 6 infusions of Tysabri:


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
User avatar
HarryZ
Family Elder
 
Posts: 2557
Joined: Tue May 25, 2004 2:00 pm
Location: London, ON, Canada


Return to Tysabri (Antegren or Natalizumab)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service