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This is a group for IIH patients to discuss Octreotide pronounced (ok TREE oh tide). Octreotide is a medication that is showing good results for IIH patients. Please post your progress in the discussion area of this group if you are being treated with Octreotide or have been approved and are looking for or waiting for treatment to begin.

The Facebook group ‘Octreotide for IIH’ is designed for educational purposes only and not for providing medical advice. ‘Octreotide for IIH’ is an organization through Facebook web site, run and administered by IIH sufferers, and their families, for IIH sufferers. We are not medical professionals, but wish to provide an informative and friendly environment to learn about Octreotide for IIH and provide support for others in similar situations. Octreotide for IIH group is not responsible or liable for any damages, which may occur as a result of your use or misuse of the information available on this web site.

Protocol 1
Protocol 1 is what was used in the study outlined in the article below. This study was published by Dr. Deftereos in 2007.
http://www.neurojournal.com/article/viewFile/1120/895
Octreotide was administered subcutaneously, at an initial dose of 300mcg (0.3mg) per day, and was gradually increased until headache was relieved or the upper-dose limit of 1000mcg (1mg) per day was reached. Treatment with octreotide at either the headache relieved amount or the 1000mcg (1mg) upper dose limit was administered for a maximum of six to eight months and afterwards the dose was gradually tapered.
The correct size vial needed for this protocol is 1000 mcg/ml 5 ml vials.

Although not clearly defined in the abstract, Dr Deftereos has confirmed that all subcutaneous doses on this protocol should be split into 3. Therefore if you were taking 0.3mg per day at the beginning, you would take 100mcg (0.1mg) dose, 3 times a day spaced out at 8 hourly intervals to total 300mcg (0.3mg) in a day. If you were taking 600mcg (0.6mg) a day, you would take a 200mcg (0.2 mg) dose, 3 times a day spaced out at 8 hourly intervals to total 600mcg (0.6mg) in a day.

Protocol 2
Protocol 2 is what Dr. Deftereos is using since the study. This is the most recent protocol.
15 days of Octreotide taken subcutaneously. You take 200mcg (0.2mg) 3 times per day spaced out at 8 hourly intervals to total 600mcg (0.6mg) taken in the day.
Day 16 – Sandostatin 30mg LAR dose plus the normal daily dose of Octreotide (200mcg (0.2mg) 3 times in the day spaced out at 8 hourly intervals.
Days 17 - 19 - normal daily dose 200mcg (0.2mg) 3 times per day spaced out at 8 hourly intervals to total 600mcg (0.6mg) in the day.
Day 20 - nothing.

At day 16 + 28 days another monthly dose and then 4 more monthly doses thereafter to total 6 monthly doses. The gap between the monthly doses should be 28 days to ensure a uniform period between doses.

After the final monthly dose 100mcg (0.1mg) taken 3 times a day spaced out at 8 hourly intervals to total 300mcg (0.3mg) in a day for 2 months.

***In one patient Dr. Deftereos changed the dose to 200mcg 4 times a day (for a total of 800mcg per day) during the initial 15 day period.

The correct size vials needed for Protocol 2 are Octreotide 200mcg/ml 5 ml vials for the daily injections.

For the monthly injections the correct vial is Sandostatin LAR 30mg.

United Kingdom Protocol 3

Revised UK version of the Administration of the Greek study originally published by Dr. Deftereos in 2007, the study, protocol 1 2007, protocol 2 updated version, currently being used. UK Protocol 3 the adaptation of protocol’s 1 & 2 is revised due to recent 19 days Trial Treatment effective for Charlotte Durham.

Protocol 3 Total of 8 month course

Octreotide 200mcg to 1ml strength/5ml multi vials subcutaneously (sc) single daily injection, using 2.5ml syringe maximum injection in one site + increase

15 days of Octreotide initial dose of 600mcg/0.6mg/3ml x 2 sc injections one of 500mcg/0.5mg = 2.5ml + 100mcg/0.1mg = 0.5ml increasing every other day/3rd day until maximum dosage of 1000mcg/1mg /5ml x 2 sc injections of 2.5ml x 2 preferably in the morning/am

Day 16 Sandostatin 30mg LAR dose IM+ the normal daily dose of Octreotide

Day 17 – 19 normal daily dose 1000mcg/1mg/5ml sc.

Day 20 nothing

At Day 16 + 1 month(4 weekly/28 days) another Sandostatin 30mg LAR monthly dose and then 4 more monthly doses thereafter to total 6 Monthly doses.

After the final monthly dose, wait till the next one should be due then gradually taper off for a Total of 8 weeks/56 days of decreasing doses from 600mcg/0.6mg/3ml sc decreasing every other day/3rd day until 300mcg/0.3mg/1.5ml sc. has been reached continuing for a further 50 days, to prevent relapse.

Note* a slow reduction of Diamox 250mg (Acetazolamide)

Patients with nausea/vomiting – administer anti-emetic

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Did you have the nausea and vomiting , Leslie ?