New Study?

[Bigtime]

Is anyone taking part in this new study? Its for a drug called Signifor (Pasireotide) 

Pasireotide (SOM230, trade name Signifor^[2]) is an orphan drug approved in the United States^[3] and Europe^[4] for the treatment of Cushing's disease in patients who fail or are ineligible for surgical therapy.^[5][6] It was developed by Novartis. Pasireotide is a somatostatin analog with a 40-fold increased affinity to somatostatin receptor 5 compared to other somatostatin analogs.

Pasireotide was approved for Cushing's disease by the EMEA in October 2009^[7] and by the FDA in December 2012.^[8]

Pasireotide LAR was approved by the FDA for treatment of acromegaly in December 2014, and had been approved for this indication by the EMEA one month earlier.^[9]

[spiny]

I've not heard of this study Bigtime. Where is it taking place?

[CHfather]

Looks like it's in Philadelphia (click on "contacts and locations" at the top left of this page: https://clinicaltrials.gov/ct2/show/NCT02619617).  Gotta say that the goal of stopping a CH attack within 30 minutes seems uninspiring, though I guess for intractable folks it might turn out to be something.  A long, long way from any real-world application right now (five years minimum, based on the current clinical trials stage).  Looks like it's similar to octreotide, which is sometimes prescribed as an abortive.

There's a small discussion of this drug from 2013 at ch.com.  Just a person asking about it and posting some info -- no one who had tried it. 

[Pixie-elf]

Hmm... This makes me wonder if this will work on Idiopathic Intracranial Hypertension too. Octreotide worked on it, as well.

I wonder if it works without the constipation? If so that'd be a big benefit.

[Bigtime]

Yea, not sure how I feel about it yet. 

They said its for residents in NY and CA so I thought I would go through the motions to find out more about it. I didn't get that far CHfather, the part about stopping within 30min. That too doesn't interest me personally. 

Ill let you know, how it goes or what they say. They're digging up my medical records which will be a difficult task. 

Not familiar with Octreotide but Ill have a look, might fill me in more about Signifor if similar. 

[CHfather]

On 5/4/2017 at 5:01 PM, Bigtime said:

Pasireotide is a somatostatin analog with a 40-fold increased affinity to somatostatin receptor 5 compared to other somatostatin analogs.

Up top there, in your original post, it says that thing I just quoted.  Octreotide is also a somatostatin analog, and I gather that's saying that pasireotide binds better to those receptors than octreotide does. 

I remember first reading about octreotide as a possible CH abortive at the Mayo Clinic page about CH, but I'll be darned if I can remember anyone here ever saying they were taking it for CH.  I think I looked it up at ch.com once, and there were some people with chronic CH who found it helpful.  Seems to be a lot of serious medical literature saying that pasireotide is better than octreotide in quite a few non-CH situations (that's just what I'm getting from a very superficial flyover), so maybe it could be a good thing.  

And it could be that 30 minutes is just some kind of measurement parameter they set, even though they might be hoping for much better than that.

I think I saw that this study was going to use placebos.  I guess one would expect that a solid study would . . . but my greatest admiration always goes out to people with CH who are willing to risk taking a placebo during an attack in order to test a possibly effective medication.  Many folks did that to test that GammaCore device (using a fake device in that case), and my hat is off to them.