Some PLD Trials
Taking Octreotide
A 2014 study in the PKD animal model shows Tolvaptan + octreotide to have a synergistic effect on cyst formation, better than either one alone.
Octreotide LAR is also known as Sandostatin LAR Depot. It is given in the doctor's office deep intramuscularly every 28 days. It contains little polymers that keep the medication in our bodies for 28 days. There are many side effects. It is still in clinical trials and not yet released for the treatment of PLD. This would be an off-label use of octreotide.
Blood Work, Imaging, Considerations
You need a screening exam to check your:
MRI done once a year to check size
Thyroid
Blood sugar
Liver function tests
Kidney function tests
Electrolytes
Complete blood count
Bleeding time
Protime
Be sure you are not likely to get pregnant
Thyroid function
Intestines are good without any malabsorption problems
Gall bladder has no sludge or stones
Side Effects
Each time before you receive the injection, get a serum blood sugar done. Octreotide can affect blood sugar.
I know of a person who stopped octreotide because neither she nor her doctor could see any improvement and she experienced too many side effects. Another woman from Holland stopped octreotide due to difficulties with her menses. I am fortunate. Researchers can skip a dose or cut back to a half dose. Some have seen 39% shrinkage in their liver size
First Dose of Octreotide
The test dose was given in hospital, subcutaneously, a very small amount, to test my body's reaction. Following the test dose
my initial dose of Sandostatin LAR
Depot was 40 mg. Some can have a severe reaction with diarrhea and weight loss. Researchers can cut back the dose to 30 mg and later to 20 mg.
Still some had some reactions from time to time, especially if coincidentally taking any of the following:
Grapeseed oil extract
Imitrex for severe migraine
Become dehydrated
Benefits
The benefits have to be weighed against the side effects for you in particular. This is between you and your doctors. But when it works, it really works. It is said to work best in young women but that does not mean will not work for you. If you doctor agrees and you are willing, give it a try. Every 6 months (initially it was every quarter) repeat the blood work.
Clinical Trials
There is a completed phase II octreotide LAR clinical trial from the Mayo Clinic in Rochester Minnesota USA with 42 participants. The trial has determined that long acting injectable octreotide (given once every 28 days) is useful in reducing severe polycystic liver disease size.
