@Ellamarie In order to get it covered we went went under IBS. It is used for this. I have IBS, Colitis and dumping syndrome all caused by IH. Many with IH have issues with the big "D" we filed under infusion therapy, I had to have a home nurse monitor me and even drew my injections 1 time a week due to my eyesight but once I got my site back I drew them myself, and she just checked on me.. I was on it for 8 1/2 months-Start to tapering off. You can go to my FB Page "Octreotide for a Possible Cure for IIH" Print off the Greek studt and any other info on my page including the Introductions of myself, Sharon Durham, Charlotte Durhamand anyone else currently that is being treated. My intro gives my medical providers info, have your doc call her and discuss it as she is the first since the study to treat IH sucessfully with octreotide. I would be happy to speak to your doc as well on a patients view. Give him the info and allow him time to review it. Octreotide is being used now for cluster headaches and migraines in ER's with success. Also print this study http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.iovs.org%2Fcontent%2F42%2F10%2F2193.full&h=4bf49 This says octreotide is being used for IH despite not being FDA approved for IH. This will help explain how sight is restored like mine. I was blind for just over 10 years in my left eye (total darkness and legally blind) yet by my 5th month my sight has been restored to 20/30 and my organs that were failing are normal again. I am IH symptom free.

That is absolutely amazing. The big D is not something I battle though, so what do I do? I am still so new to PTC that I'm afraid I have to go through the ringer first before they will try this. :( I just am nervous about losing my quality of life and my job.

I don't battle the big D either. And BC/BS doesn't cover drugs that are considered experimental for whatever disease. We'd have to figure out a possible disease that the drug treats, find out if there was any possible way we meet the treatment criteria, and then go from there.

I have no idea what my neuro will do. So far he has not been the model of flexibility. My new PCP might help, though. I haven't met her yet (1st appt in march), but we'll see.

I have no idea how you got it through BC/BS. When I ran it through their drug data base it said it wasn't covered by the plan. https://www.myprime.com/MyRx/MyPrime/#ViewPriceDrugsEvent/133968/00703332101/2/

There is an appeals process, but if you went through it, trust me, you'd know it. (It's a big fat unrelenting pain it the buttocks)

Please share your secret. Maybe it's something your doc did????? Or maybe it is specific to your employer's plan?

Here is what the drug is approved for. Anything else is considered experimental, as I understand it:

Drugdex recognizes the use of octreotide in the treatment of:

Bleeding esophageal varices with an appropriate adjunctive therapeutic intervention such as sclerotherapy

Hyperinsulinemia from severe refractory metastatic insulinoma as palliative treatment

Secretory diarrhea in patients with AIDS (acquired immunodeficiency syndrome) that has failed antibiotic/anti-motility therapy

Non-infective diarrhea:

chemotherapy-induced diarrhea

acute radiation-induced diarrhea

persistent ileostomy diarrhea

refractory familial amyloidotic polyneuropathy-induced diarrhea

The NCCN Drugs & Biologics Compendium recognizes the use of octreotide for additional uses beyond the FDA-approved labeling in the treatment of the following conditions (Refer to the NCCN Drugs & Biologics Compendium or NCCN Clinical Practice Guidelines for detailed recommendations):
Neuroendocrine tumors
Thymic Malignancies
http://www.bcbst.com/mpmanual/Octreotide_Systemic.htm

BS/BC covered my octreotide because I have Non-infective diarrhea aka Colitis, Irritable Bowel Syndrome, Dumping syndrome. I actually have all of these. caused by the IH. We had to file under infusion therapy and have a home nurse come 1 time a week. But very well worth it.