Old 09-25-2018, 07:31 PM #1 (permalink)
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Default requip/ropinirole

Someone in one of the ALS facebook groups has started taking Requip, prescribed by his neuro off label to treat als, and has reported positive results.

I'm curious if anyone on here is taking it, or if anyone has any more insight besides what has been published in brief online medical news articles. I'm thinking of asking my neuro about it.
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Old 09-25-2018, 07:39 PM #2 (permalink)
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Default Re: requip/ropinirole

I havenít heard of it being used in ALS. Itís main use is for treating restless leg syndrome. It works by increasing Dopamine, which also makes it useful for Parkinsonís.
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Old 09-25-2018, 08:11 PM #3 (permalink)
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Default Re: requip/ropinirole

Karen, Japanese study suggests it could potentially help treat ALS: https://alsnewstoday.com/2018/08/31/...cal-study/?amp
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Old 09-25-2018, 08:14 PM #4 (permalink)
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Default Re: requip/ropinirole

So, how would Dopamine be helpful to our needs? Would it help with overall weakness, balance, cramping, or what?

Need our experts to assist here with understanding its potential benefits.

Cathy
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Old 09-25-2018, 08:31 PM #5 (permalink)
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Default Re: requip/ropinirole

Sounds like this was a preclinical study, meaning that they need to test it in a phase 3 trial. The good news is that the drug is already out there. Itís not horribly expensive (yet) and generally fairly well-tolerated. Itís use in ALS would be off-label. I donít know how the Dopamine enhancement helps ALS, but it sounds promising. Iíll ask my Neurologist too..
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Old 09-25-2018, 11:52 PM #6 (permalink)
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Default Re: requip/ropinirole

Mirapex' successor drug, dexpramipexole, in the same class, has been tested in ALS in Phase III. It failed to meet endpoints in 2013.

No doubt, Requip will be trialed in ALS.
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Old 09-28-2018, 10:24 AM #7 (permalink)
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Default Re: requip/ropinirole

This is a drug I'm very excited about. I'm no expert in the field, but the methods used in the study to identify the potential for this drug sounded groundbreaking, especially when one considers the historic failures of ALS drugs to make it from a viable mouse model to a human success story. I'm hoping to get my doctor on board as well.
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Old 09-28-2018, 10:34 AM #8 (permalink)
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Default Re: requip/ropinirole

This is not the first time they have used this technology to look at ALS treatments. The retigabine trial came from results of a study that used this technology. It was also used to test c9 antisense though the FDA also insisted on a mouse study which would not be needed for a drug already approved for another indication.

I think a lot of places are using cell lines for this This is an illustration of why biomarker studies are so important. They need our blood and skin to make these cell lines. My sister and I were in the biomarker study that supplied skin for the study that looked at retigabine
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