advertisement
Reply
 
Thread Tools Display Modes
Old 07-30-2013, 09:20 AM #1
NewsBot NewsBot is offline
News Gatherer
Community Support Team
 
Join Date: Dec 2007
Posts: 65,355
15 yr Member
NewsBot NewsBot is offline
News Gatherer
Community Support Team
 
Join Date: Dec 2007
Posts: 65,355
15 yr Member
Default Patient taking Novartis MS pill developed rare disease (Yahoo)

ZURICH (Reuters) - A patient taking Novartis' multiple sclerosis pill Gilenya developed a rare and potentially fatal viral disease, the Swiss drugmaker said on Tuesday, an unexpected setback as it faces growing competition from new oral treatments. Gilenya is one of Novartis' big new drug hopes, growing 66 percent in the second quarter to $468 million. But the drug faces competition from new medicines such as Biogen Idec's Tecfidera. Novartis said it had been informed of a case of progressive multifocal leukoencephalopathy (PML) in a patient who had been taking Gilenya for MS for seven months. ...




Read the full article...

(From Yahoo Diseases)
NewsBot is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (07-30-2013), barb02 (08-01-2013), Kitty (07-30-2013), tkrik (07-30-2013)

advertisement
Old 07-30-2013, 09:57 AM #2
Kitty's Avatar
Kitty Kitty is offline
Wisest Elder Ever
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Kitty Kitty is offline
Wisest Elder Ever
Kitty's Avatar
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Default

Oh my goodness.....scary, scary stuff!
__________________
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
Kitty is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (07-30-2013)
Old 07-30-2013, 10:39 AM #3
ANNagain ANNagain is offline
Senior Member
 
Join Date: Nov 2011
Location: Boston
Posts: 1,105
10 yr Member
ANNagain ANNagain is offline
Senior Member
 
Join Date: Nov 2011
Location: Boston
Posts: 1,105
10 yr Member
Default

For those "too tired" (and I have been there) to read the link, they are talking about PML.

Apparently there have been other cases of PML in Gilenya patients but it has been attributed to a past history of Tysabri.

The current case does not have a past history of Ty.
ANN
ANNagain is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ewizabeth (08-02-2013), Jules A (07-30-2013), Kitty (07-30-2013), SallyC (07-30-2013), tkrik (07-30-2013)
Old 07-30-2013, 11:31 AM #4
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

That is scary! I am not a candidate for Gilenya but my neuro and I discussed it and decided it was not an option for me.

Anyhow, in reading the article, I wonder if the patient really had MS. It states, "The course of the underlying neurological disease was rapid with some atypical findings for MS on the MRI scans of the brain and spinal cord, as well as some unusual clinical features," Novartis said in a statement." I'm not sure if it says this was the presentation that led to the patient's dx or if this was the presentation when PML was found. I read this and thought, "Oh no! What if he didn't have MS and they gave him this med for some other neurological disease or something and they ended up with PML." It really would say a lot about getting a proper diagnosis before treatment.
tkrik is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ewizabeth (08-02-2013), Kitty (07-30-2013), SallyC (07-30-2013)
Old 07-31-2013, 09:37 AM #5
Lynn's Avatar
Lynn Lynn is offline
Member
 
Join Date: Sep 2006
Location: Australia
Posts: 660
15 yr Member
Lynn Lynn is offline
Member
Lynn's Avatar
 
Join Date: Sep 2006
Location: Australia
Posts: 660
15 yr Member
Default

Sorry, but I can't help but think that whenever you roll the dice with nature it is a major gamble. I can't help but think that once you open that door by suppressing the immune system, you leave yourself wide open to all kinds of potential nasties as well as the good that comes with it.

I believe it's a risk/reward scenario. I have chosen to continue Tysabri in spite of being JC+ - for others thinking that Gilenya or all of these other massive drugs don't have a down-side, think of the size of the demon you are dealing with. This isn't a headache - be aware, be realistic - you can't fight a lion with a mouse.
__________________
Lyn
.



Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
Lynn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (07-31-2013), ewizabeth (08-02-2013), Kitty (07-31-2013), Natalie8 (08-02-2013)
Old 07-31-2013, 10:53 AM #6
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

It's a personal decision, sometimes a bad one, most of the time
a good one, with Tysabry. The jury is still out on G & T.
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
Old 07-31-2013, 11:20 AM #7
ANNagain ANNagain is offline
Senior Member
 
Join Date: Nov 2011
Location: Boston
Posts: 1,105
10 yr Member
ANNagain ANNagain is offline
Senior Member
 
Join Date: Nov 2011
Location: Boston
Posts: 1,105
10 yr Member
Default

Sally, G&T?
Gin & Tonic? Is there a study for that?

ANN
ANNagain is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
barb02 (08-01-2013), Debbie D (08-02-2013), jprinz99 (08-05-2013), tkrik (07-31-2013)
Old 07-31-2013, 11:59 AM #8
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Quote:
Originally Posted by ANNagain View Post
Sally, G&T?
Gin & Tonic? Is there a study for that?

ANN
Idiot!!
Gilenia and TEC

__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (07-31-2013), barb02 (08-01-2013), ewizabeth (08-02-2013), tkrik (07-31-2013)
Old 07-31-2013, 01:45 PM #9
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

A gin & tonic would work too. It may not suppress our immune systems but could help in other areas of our lives. j/k

I was in the hospital last week for a few days. I went to a local teaching hospital. It was interesting as you have a whole team of drs that come in during morning rounds. The attending was listening to my stomach and asked me if I drank alcohol. I said, "No. Why? Should I start?" In one sense I was serious because they say drinking wine can help with tremors but I also was kind of joking. Anyhow, the interns and residents started cracking up. The attending said that because of the antibiotics I was not going to be allowed to drink alcohol. I knew that as Flagyl and alcohol together can be fatal.

Now, back to the topic . . .It is a crap shoot when it comes to immunosuppresants. Choosing the one that is going to be best for you is a personal decision and one that needs your neurologists input as well as doing your own research. For now, I am not on a DMD. I may have to make the decision to go back on one and will certainly be researching my options so I can make an informed decision.

I feel so bad for the patient and their family. I still question if his/her neurological issues were MS or something else. Did he/she have an infection already and this made it worse? That would be sad.
tkrik is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
barb02 (08-01-2013), ewizabeth (08-02-2013), Natalie8 (08-02-2013), SallyC (07-31-2013)
Old 08-02-2013, 08:28 AM #10
Debbie D's Avatar
Debbie D Debbie D is offline
Elder
 
Join Date: Jan 2008
Location: Naperville IL
Posts: 5,169
15 yr Member
Debbie D Debbie D is offline
Elder
Debbie D's Avatar
 
Join Date: Jan 2008
Location: Naperville IL
Posts: 5,169
15 yr Member
Default

Personally, I like vodka and tonic

I have respect for the pharma that reported this info...of course, it was a European pharma and not one from the US...wonder if they would be so eager to report this?

I think all docs should test EVERY MS patient for the JC virus before prescribing any DMD.
__________________
Instant Karma's gonna get you-gonna knock you right in the head...John Lennon
Debbie D is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ewizabeth (08-02-2013), Kitty (08-02-2013), SallyC (08-02-2013)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 06:21 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.