Is anyone in or following the CuATSM Study?

[KimT]

https://newatlas.com/als-mnd-drug-c...NQrwUU1_KfxNulx8mxNHBqjXL_YU8hHcm1suw9r6aAnBE

I have a hard time reconciling this with the fact that my free copper was high at diagnosis and I got it down to normal levels. My serum copper level was always normal but it took daily zinc to get my free copper down. Perhaps I had it backwards.

I remember e-mailing Dr. Bedlack about it and he mentioned that copper might be good and told me about this upcoming study. Seems to be successful in some PALS.

Any thoughts?

 

[affected]

It's been wildly hitting the news here this week.

I believe the researchers probably have a much better idea of the science behind this research and trial than the bits of flotsam the media are spewing about.

Sorry if that sounds harsh but honestly the hype has really gotten a lot of us that are involved with ALS down a bit. People are running all around social media saying oh wow looks like they found a cure!

 

[affected]

Kim this might explain the whole study better for you and the difference between this drug and taking copper or other supplements? (I just found this after I posted the previous message here!)

https://mndresearch.blog/2019/01/15...hruuRLtavIsJA7mAytInMvMAkInL6TRKgWUFx5gqmRM6c

 

[KimT]

Thanks. I had correspondence with Dr. Bedlack a couple of years ago when I questioned the amount of copper in another supplement that was trialed. He wrote back and said copper may be of benefit to ALS and told me about CuATSM. I didn't hear much more until the Phase 1 results.

It still doesn't address my main concern and that is free copper reduction. I may write another e-mail to Dr. Bedlack since he seems more interested in the investigation of non-pharmaceuticals.

 

[affected]

Good idea to write to Dr B, but you might want to try and contact the research group as this is being done here in Australia so I'm not sure how much in touch with it Dr B is?

I sure can't answer anything to your question about free copper reduction :shock:

 

[Anjum nazir]

Yes ...it is too promising.....but what about current patients.....can we get cuatsm from market...and try it...

 

[Nikki J]

No it is not available other than through the study. There are people who
are trying to find a way to have it manufactured and people who previously did. I believe the study drug was tweaked in some way that we can not know exaactly how.

Also consider this is a smalll phase 1 study. A positive result is great but there is a long way to go. Sadly even positive phase 2 trials have utimately failed phase 3.

 

[lgelb]

It is not supplemental copper that is good, but correcting copper dysregulation could be -- how the body processes copper once it has it.

ALS Untangled has summarized the poor (non-existent) case for supplemental copper and pointed out the difference in using a copper chelator such as CuATSM is.

But the Phase I trial was open label and there was no control group, so there is not hard evidence as yet. The Phase II study will tell us more.

You can also read the abstracts from the MND Association programme that summarize a lot of recent trials, including this one.