Author Topic: Neramexane first drug to be considered tinnitus treatment -clinical trials US  (Read 8221 times)

newmommyLA

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Merz Pharmaceuticals is in phase 3 of clinical trial study and there are now many locations in the US participating.  I'm registering, but not sure if I'll do it.  I figure if it passed phase 1 & 2, it's got to be getting some positive results.  Providence hospital in Burbank is participating and it's only 13 miles away...very tempting.  I have read that initially this drug was considered to treat tinnitus only in patients who had acquired it no more than one year ago.  Supposedly that is a requirement for participation in Germany, but not in many other countries.  Neramexane is also supposed to help people who have sleeping difficulty b/c of tinnitus. 

I have my 2 week follow up at House this Wednesday and I'm going to ask Dr House and Dr Stefan what they think about it before I go for it, but I am very interested.  There are MANY locations participating.  Anyone else want to give it a try? 

I looked into rTMS clinical trials and they don't accept people who have metal objects in their head.  I'm guessing that rules post AN surgery patients out?  If so, what a bummer.  It seems to be providing great results.

Still ringing in the New Year!

Amy

6mmx8mm AN rt side.  Mid-fossa surgery HEI House/Schwartz 10/28/09.  Temp facial paralysis (8 weeks), SSD, severe tinnitus & hyperacusis, tumor all gone.  12/23/09 cochlear nerve section (trying to reduce tinnitus) no major improvement on tinnitus. Trying biofeedback/neurofeedback for tinnitus.

moe

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So I'm wondering if a titanium implant (from my BAHA  that I don't use) is considered metal?
I live near Seattle so if you know if they are doing trials in that area, let me know!
Maureen
Still ringing in the new year too :o
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

CHD63

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Amy ......

I am really interested to see what the results may be from this study.  I am not in a location where I can participate, but I am all for relief for people who have tinnitus so badly it is interfering with their lives.

I have titanium mesh in my skull now, but I do not set off metal detectors in the airport.  Also, if it were truly metal, we could not have follow-up MRIs, which all of us are having so I do not think the titanium would contraindicate anyone's participation in a trial.

Let us know how this goes.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

sgerrard

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Um, a little metallurgy for my friend Clarice. :)

Most metals are not magnetic. Examples include titanium, along with lead, silver, gold, platinum, aluminum, copper, and in fact a big chunk of the periodic table. There are only a few magnetic metal elements: iron, nickel, cobalt, and two rare earth metals. The two rare earth metals are dysprosium at a low temperature, and something called gadolinium, which we Aners know as the contrast agent in MRIs. Other magnetic metals, such as steel, are alloys that contain iron, nickel, or cobalt.

Magnetic metals are very easily detected by metal detectors. Non magnetic metals can be detected as well, but only if there is enough of them and the detector is turned up high enough. Airport metal detectors are set low enough not to trigger on small amounts of non magnetic metals, such as the titanium in your head. (The way things are going, though, that might change one of these years).

I have no idea what the requirement for no metal in the head might be, so I can't say if titanium would be an issue or not. I did Google this, and came to a web site called ClinLife that has details on this trial, including this sentence: "Tinnitus NOT due to a neurological disease or to an ear, nose and throat primary disease (otitis media, Meniére´s disease, otosclerosis, etc)." I'm not sure, but I think having an acoustic neuroma might fall into that category and disqualify you.

Even so, if the trial goes well and the drug proves useful, it may become available to us in the future. We can always hope!

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

CHD63

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Ouch!  ;)  I stand corrected ..... never too old to learn.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

newmommyLA

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Bummer.  I was not eligible for the Neramexane trial because of my prior AN.  I have hard a lot of good things about the drug and how it might become available in 2012-2013, but the most effective treatment is 3-12 months after tinnitus onset.  So, by the time it comes out, I don't know if it will help any of us or not.  I really have mixed feelings about participating in clinical trials and only considered this one because it was already at stage 3 and that makes me less afraid of horrible side effects knowing it has been tested a lot on humans.  Having had an AN might rule us out of most trials and if that is the case, so be it.  I just wanted to try and help the cause and of course, find some relief at the same time if possible.

Amy
6mmx8mm AN rt side.  Mid-fossa surgery HEI House/Schwartz 10/28/09.  Temp facial paralysis (8 weeks), SSD, severe tinnitus & hyperacusis, tumor all gone.  12/23/09 cochlear nerve section (trying to reduce tinnitus) no major improvement on tinnitus. Trying biofeedback/neurofeedback for tinnitus.

moe

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Amy,
Thanks for trying! Never give up hope, that's what will keep you going. ;)
Hang in there,
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Sandra77

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I'd be interested in trying Neramexane.  How would I find out if there's a trial being conducted near me?  I live in South Florida.

Larry

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Sounds interesting. keep us informed


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz