I just read the article that is amazing! Lucky for that girl.It sure would be nice if it was a cure . that would be great. what do others think?

Wow - that's encouraging. If I remember correctly wasn't someone on this sight going to try this drug?

Very interesting...here's another...an email string posted on facebook but I was able to access without being logged in. Anyway interesting perspective from IHRF on being able to capture experiences of Ocetraide users and conducting a clinical study in the US

http://ja-jp.facebook.com/topic.php?uid=105685712814270&topic=232

Interesting, but not relevent for us. There is no clinical trial, and we can't get the drug unless the doctor is willing to prescribe it off label, which he might be willing to do since all our drugs are off-label. Mine wouldn't do it though. I know him. Then on top of it we have to pay for it.

I thought about how I could get it, and I could - I'd just go to one of the numerous countries who have pharmacies where a prescription is not needed and get it there. But then there is doctor support.... hmmmm... It would clean out my savings to pay for it, but that's another story.

This is great AND frustrating......has anyone had their hormones checked??? I have been going around and around since this all started with EVERY doctor! My daughter has the estrogen of a 9 year old and the elevated growth hormones of an 11 year old. She did not get extremely sick UNTIL her periods stopped. It makes sense that the med works on PTC since it was designed to target hormone imbalances! Sooooooo maybe those who have hormone imbalances can get their docs to prescribe the med????Worth a try.

Gosh that family looks so familiar. Have they talked about this on tv before? I know I've seen them before.

Very interesting. I read both links and did a Google search of the girl whose dad found the Ocetraide information online and I found another lady who is also getting treatment at the same hospital is now trying to get her insurance to cover it..

I know we've discucussed this drug quite a bit on this discussion board in the past. Some people have even know others who have tried it. If you are interested check the archives.
Mandy

We actually have a member here - Leslie Jobe Shelton who was the first in the US to try this and she has done quite well . She is very happy to share info and is an advocate for Octreotide . Hit her up here or on Facebook "Leslie Jobe Shelton" or look on Facebook for "Octreotide for IIH "

Welllll.... It IS available in the United States, but not approved by the FDA for the treatment of IIH. So it would be an off-label use. All it would take is a doc willing to do it. And the money to pay for it (insurance wouldn't).

I found the generic form pretty cheap at a canadian pharmacy: http://www.northmeds.com/drug-sandostatin.html

Not sure what the dosage is, so not sure of the total cost.

Also not sure about the side effects. Some are Cardiac. I'd want my neuro to do a careful cost-benefit analysis for me to make sure it's a good choice for me.

What I'd really like my doc to do is write a grant proposal and get funding for a double-blind study. That would slow things down, though, and wouldn't help me right now, which is when i need it.

Whoops! We CAN do something. In the U.S. there is an organization called NORD that funds reasearch into orphan diseases. If everyone wrote and asked that IIH be added to the research priorities for 2011, it would help.

email here: orphan@rarediseases.org

NORD website: http://www.rarediseases.org/info/contact.html

Does anybody know how to get this out to the general IIH population, like to all on the registry, or an email list? Can you help?

There is a doctor at UC Davis that just gave 4 patients scripts for Octreotide. One of the girls is on facebook and I met her through her youtube videos on IIH/PTC. I have been asking her about it. She sent me this link.

http://www.neurojournal.com/article/viewFile/1120/895

Hey there everyone! I would love to answer any questions you have regarding octreotide. I am the first world wide since the study to complete treatment with huge success. Also the first in the USA. I and my good friend Sharon Durham from the UK who is mother to Charlotte Durham have created a FB group/page called "Octreotide for a Possible Cure for IH" also by mid Feb our website will be up and running to help everyone world wide. www.octreotideforIIH.com I am no longer part of the Octreotide for IH facebook group due to the instability the original creator and others are now leaving so this is why Sharon and I started our group and website to help and support others.

@seaSprite.....Insurance will cover it. I have BC/BS and it did.
@fayerae1220 Octreotide for IH on FB isn't very stable and people are leaving. I created a new group called "Octreotide for a Possible Cure for IIH" on FB and we have a website called www.octreotideforIIH.com it will be completed by mid Feb.

To all, please feel free to got to either of these places for support, or email me at Legalpro01@aol.com I would be more than happy to answer any questions. This drug is amazing!!!!

I also have BCBS of IL, how did you go about getting it covered? How long were you on it? How did you approach being put on it with your doctors? I am at Rush University in Chicago for treatment and am seeing a resident doc with an attending overseeing (obviously) but don't know how to approach it. I don't want to offend the doctors since they aren't telling me about it, so what is the best approach? HELP! haha