Levosimendan

[Clamdigger]

The clinic called and asked me if would be willing to take part in the Orion (levosimendan) phase III trial.

Just wondering if anyone here had any experience with it?

https://www.orion.fi/en/Orion-group/media/press-releases/2018/orion-has-started-a-phase-iii-trial-to-develop-a-drug-for-als---the-patient-recruitment-has-begun-/

 

[Nikki J]

Here is the clinicaltrials listing
https://clinicaltrials.gov/ct2/show/NCT03505021?term=Orion&recrs=ab&rank=10

 

[lgelb]

In Phase 2, it failed to show significant seated position SVC improvement but did hit the mark for lying down (supine) measurement. Of course no way to know yet if that delays BiPAP or death, or affects quality of life.

Since it acts directly on the heart, it will not be appropriate for all (I wouldn't meet the criteria myself). But if your BP is pretty stable and you meet all the other criteria, worth a look.

 

[Clamdigger]

Surprisingly, besides the ALS, I'm basically healthy.

I do have a family history of heart disease though. I guess I'll do all the research and then flip a coin.