New and have some questions about drug therapies

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Jewels99

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Hello all! I'm new here and I'm in the process of being DXed. I want to thank you all for sharing so freely on here..for people new to the process, it brings great comfort as well as a wealth of knowledge.

My appointment with the MND/ALS Center at the U of U is over a month away. I can't believe how slow everything runs when it comes to ALS.
With it's course, you would like there would be some sense of urgency...

Anyway, I don't have many privilages here and can't really access anything, so I was wondering if some of you could elaborate alittle or enlighten me on some of these drugs...

It appears that 3 treatments, talampanel, tamoxifen and lithium have
encouraging data from small, pilot studies in people with ALS. But what of these others...and have any studies been initiated that use combinations of these drugs?
What's the hold up on the 3 listed above...if it shows promising results...lets get it going with everyone! Wouldn't 1000 of us be a strong enough study to show actual results?
I just feel so frustrated right now...

These are the drugs I found listed...

Ceftriaxone: Glutamate antagonisms (Increases EAAT2/GLT1 activity), antioxidant
ONO-2506 Prevents reactive astrocytosis; glutamate antagonism

Co-enzyme Q-10 Antioxidant; facilitates mitochondrial respiration

Memantine: N-methyl D-aspartate (NMDA) receptor antagonist

MCI-186: Antioxidant, facilitates mitochondrial respiration; anti-apoptotic

Diaphragm Pacing: Implantation of a minimally invasive diaphragm pacing system (DPS) with therapeutic electrostimulation may help maintain diaphragm function and slow or arrest the rate of respiratory decline in patients with amyotrophic lateral sclerosis.

Arimoclomo:l Heat shock protein inducer

Antisense Oligonucleotide: Decrease production of SOD1 protein. Trial for people with familial ALS
SOD1 secondary to mutations in the gene for superoxide dismutase 1.

Talampanal: a-amino-3-hydroxy-5-methylisoxazole-4-propionic acid (AMPA)
receptor modulator (glutamate antagonist)

TRO19622: facilitates mitochondrial respiration; glutamate antagonist;
anti-apoptotic

R+ Pramipexole: Antioxidant

Arimoclomol – FALS Heat shock protein inducer; Trial for people with ALS
secondary to mutations in the gene for superoxide dismutase 1.

Lithium: Increased autophagy, anti-apoptotic, glutamate antagonist

Any and all info or comments would be greatly appreciated...
Thanks again for sharing so freely here...It has meant alot to me!
 

brooksea

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Hey Julie!

Welcome to the forum, sorry you had to look us up.

A good place to find out about therapies and the lack thereof is at the ALSTDI forum. There are members very well versed in the research aspect of almost every therapy known to ALS. This is a well reputed forum and research facility started by a young man that had ALS.

As for Lithium, there is a "self" study at present:

alslithiumdotatspacedotcom
 

Jewels99

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jimercat

Thank you so much for the warm welcome and for answering. :)
I will check out the websites you suggested.


Have a great evening
 

CindyM

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Hi Jewels- I don't have much to add but wanted to welcome you to the forum. Let us know how your research is going! :-D Cindy
 

sironside

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The only thing I can tell you about the reason they don't hurry up and treat everyone with these drugs is because they either have mixed results (some studies say they work others say they don't), they don't work at all for ALS, or they just don't have enough data to make a conclusion about their effectiveness yet. I can tell you one thing about Lithium is that I found mixed results about it's effectiveness with ALS. One thing researchers keep in mind with any results of meds is the placebo effect. This could also be delaying the whole process.

Hope this helps,
Student Nurse
 

kevinw

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I would like to add to this thread the question if anyone thinks "clincal trials" are a good idea if someone is in the early stages of a MND? I have an offical diagnosed of ALS although they are watching it closely as PLS (my symptoms are mainly in my legs with some in my left arm). I had a clean EMG in my legs months ago and my leg symptoms have progressed for about a year & a half now. I guess I am just a little scaried to try something new and not approved yet. My legs are pretty much to the point that I can not make it thru a week of work with what I do, so I didn't want to just go on disability and do nothing. So I was asked to take part in this study, which would at least be a little productive on my part. But I really think that if I try this I would need to go on disability due to what is being asked during the study (a lot of visits & follow up tests).
 

ZenArcher

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Clinical trials are a personal choice. Only you know how you feel and what you can and can't handle. Do some research on the trial and what the endpoints are. In other words what is the trial attempting to prove, slowed progression, drug safety, etc. See what mechanisms it is supposed to work on and what the expected side effects might be. Then discuss that with your care team and make an informed decision. Trials are just that...trials.
 

brooksea

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You can always opt out of the trial if you feel you are harming yourself.

My husband got out of the trial he was in because the measurement techniques they were using to gauge progression in ALS made his symptoms worse.

He felt bad about it, as he wanted to be able to contribute something.
 
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