Octreotide

octreotide LAR
sandostatin LAR
somatostatin analog LAR
lanreotide LAR

Octreotide Sandostatin LAR

A somatostatin analogue, octreotide, is the first medication in clinical trials for polycystic liver disease. This long acting form of somatostatin is manufactured by Novartis. It has been used successfully to treat acromegaly, carcinoid, and other rare endocrine tumors. Other names include somatostatin, octreotide, lanreotide, sandostatin LAR.

Octreotide Clinical Trials

The first trial was undertaken in Bergamo, Italy at the Mario Negri Center. The Mario Negri Center completed a small Somatostatin trial with 12 patients determining that Octreotide LAR was safe and that it reduced PKD Polycystic Kidney size. One participant withdrew from the trial due to non-symptomatic gallstones. Another withdrew from asthenia (weakness, lack of energy and loss of strength)

Doctor Marie Hogan made a very astute observation during the trials, she discovered that those with an elevated alkaline phosphatase seemed to have a better result in using octreotide. In pooled patients from three different centers (around the world) ADPKD subpopulation, elevated alkaline phosphatase predicted liver volume reduction (?3.2%, P = 0.03) but did not predict kidney volume reduction (+0.1%, P = 0.97).

There is a completed phase II octreotide LAR clinical trial from the Mayo Clinic in Rochester Minnesota USA with 42 participants. The first year of the trial has determined that long acting injectable octreotide (given once every 28 days) is useful in reducing severe polycystic liver disease size.

The Mayo has another Pasireotide Do not take, diabetes is reported for many PLD'rs. LAR trial for individuals who have never taken octreotide before. This trial was recruiting volunteers. There is a small stipend to help pay for travel to the Mayo Clinic once every 28 days.

Seoul National University Hospital in the Netherlands is recruiting for an octreotide LAR clinical trial. A LOCKCYST trial in the Netherlands using an analogue of sandostatin (octreotide, lanreotide) has completed with a second trial underway.

A trial in Italy is to determine if octreotide reduces liver cysts. Another is in Belguim, Netherlands and more. Search for all current octreotide clinical trials here.

Octreotide Use

Some in the USA have been successful in obtaining octreotide through their doctors by billing it as a major medical expense through health insurance. Yet some have also come off octreotide due to the many side effects. Initially a small subcutaneous test dose is given of octreotide in the doctor's office. Fasting lab work is taken of thyroid functioning, electrolytes, CBC, glucose, liver functioning tests, kidney functioning tests. These are repeated quarterly for the first year then once every six months; then once a year. Sandostatin LAR Depot or octreotide is given by deep intramuscular injection once every 28 days.

Octreotide Response Predictability

In 153 polycystic liver disease patients from 3 international centers, all were treated with octreotide or lanreotide. Mean reduction in liver volume was 4.4%. Alkaline phosphatase seemed to be a predictor of patient response to the drug regime. Elevated baseline alkaline phosphatase was associated with increased liver volume reduction during therapy trials.

Somatostatin in Flowering Foods

A food source for somatostatin researchers think though this is an interesting idea it would not make a difference in PLD liver growth. They found the following article
"Interesting, but not helpful because somatostatin would be digested and not absorbed."
For years somatostatin (octreotide, lanreotide, etc) was not absorbed until after a company developed little polymers that delayed its absorption over 28 days through injections of octreotide. I received an intravenous form of octreotide in 1996. This lasted only as long as the injection. A similar thing happens (according to researchers) with foods containing somatostatin, it too is digested and not absorbed. It is a great idea, but for now we have to go for a clinical trial with octreotide for the treatment of PLD.

Octreotide + Tolvaptan

A 2014 study in the PKD animal model shows Tolvaptan + octreotide to have a synergistic effect on cyst formation, better than either one alone. Read about some of the advances for PKD.