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02/15/2009 09:17 PM

NO MORE TENSILON

LupieToons
LupieToons  
Posts: 358
Member
I'm an Advocate

After being informed by another MG patient, and then confirming with my neurologist's office, the manufacturers of Tensilon(R), aka edrophonium chloride, have stopped production.

I inquired about an alternative diagnostic test and was informed that neurologists will most likely have to depend upon the repetitive nerve stimulation test (which is usually positive in people with myasthenia gravis).

No reason was given for the manufacturer's decision to discontinue production. The last batch expired December 2008.

I am going to see what other reliable information I can find and perhaps write the manufacturing company.

I will post a follow-up here under this topic, soon.

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02/18/2009 09:12 AM
Alexis
Posts: 3
New Member

Hi, Lynne,

This is so hard to believe. I am hoping that they can come up with something else for those MG'ers who have not yet be diagnosed.

I hope, too, that we find the piece of the puzzle that will help explain this. Thanks, Lynne, for keeping us informed.

Take care,

Alexis


02/18/2009 09:43 PM
LupieToons
LupieToons  
Posts: 358
Member
I'm an Advocate

Yes, I was very surprised to hear this news. The Tensilon test is relied upon by many neurologists and opthalmologists.

I've been scouring the 'net looking for a reason, but nothing so far.

Still looking.


03/17/2009 08:05 AM
wefeed8
wefeed8  
Posts: 11
Member

My neurologist used the Tensilon test to help with diagnosis just last week 3/11/09. I haven't seen any information about the test no longer being available. Curiously waiting to see what you find!

03/19/2009 05:18 PM
Captain
CaptainPosts: 170
Member

That was the first test that they did on me...even though it gives you your life back for about 15 seconds (as that's how long the effect of the med takes to wear off)it was the easiest and fastest way to determain if someone has MG...but I can understand why they would not maunfacturate the med anymore as most would probably go to waste then use as MG is so rare...here in Alberta we have almost 3 millione people and only 35 cases of MG...

05/25/2010 08:22 PM
mem9478

Thank you for this information, LupieToons. I had absolutely no idea that Tensilon has been discontinued. I find this quite surprising, though I suppose it's not in high demand. Nice to meet you!

05/28/2010 08:37 PM
LupieToons
LupieToons  
Posts: 358
Member
I'm an Advocate

It's nice to meet you, too!

A friend of mine with MG said her opthamologist told her he can still get Tensilon. I don't know that she asked where as she didn't mention it. Perhaps by now some other pharmaceutical company is manufacturing Tensilon?

Food for thought. Whistling


05/29/2010 07:46 AM
mem9478

LOL LupieToons! The emoticons (if that's the correct name) really say it all!

It's my understanding that because Tensilon can be very dangerous when used to determine if a crisis is cholinergic or myasthenic, this test is slowly being fazed out in many regions and I think it's a good idea. I do believe, however, that it is still valuable in helping to diagnose a patient. I'll try to remember to ask the hospital pharmacy next time I'm over there.


06/02/2010 09:34 AM
mem9478

Valeant Pharmaceuticals has advised me this morning, that "...Tensilon is no longer being manufactured or distributed..."

03/08/2011 06:39 PM
answersplease
answersplease  
Posts: 31
Member

dd's neuro called today (3/8/11) to say he 'found' some tensilon and will be doing the tensilon test on her on Fri. The test is worrisome, but the definitiveness of dx is quite a lure.
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