Treatment PLD

What are the medical treatments for polycystic liver disease?

PLD Polycystic Liver Disease medical treatments are targeted toward decreasing liver cyst expansion and slowing down cyst growth: proton pump inhibitors, lifestyle changes: (eliminating dairy, eliminating caffeine, eliminating hormones; eliminating estrogen disruptors), octreotide or sandostatin LAR Depot.

Dietary changes have brought success to some individuals. While still in clinical trials, early limited medical treatment with long acting somatostatin, given by injection every 28 days, has been shown to reduce cystic liver size from 3%-39% (in a very small sample of subjects). This is not yet approved for the treatment of PLD, yet in the USA a few individuals are able to get insurance to cover the cost by billing this as major medical expense provider one gets the injection in the doctor's office.

What are the surgical treatments for polycystic liver disease?

PLD Polycystic Liver Disease surgical treatments are aimed at debulking a massively large cystic liver: liver resection, liver transplant, and liver TAE procedure. Liver cyst deroofing has had limited success in pain abatement and works in very few patients. and even then, it usually has to be repeated within a year. Simple cyst aspiration appears to be totally ineffective.

Does octreotide have any side effects?

Yes there are many side effects. One needs to be followed by a physician each month. Among the side effects are gallstones, nausea, low blood sugar, dizziness, and many more.

How does octreotide work?

It has little polymers within the injection so the medication cannot be shaken or mixed upside down. This can cause the polymers to break. To read more try Novartis website.

Pasireotide are there any polycystic liver disease clinical trials?

Calling any USA participants with PLD who might wish to participate in the Mayo Clinic, Rochester, Minnesota USA. They are recruiting for Pasireotide Clinical Trial. The catch is currently we would have to go to the Mayo Clinic once every 28 days for the injections. The good news is the Mayo through Novartis has received special funding for participating individuals to be reimbursed for their travel expenses. The exclusion and inclusion criteria is available online.

Some individuals will receive a placebo. I received placebo in the first year of the octreotide clinical trial. Receiving placebo for a year is fine with the added benefit of health checks given by the experts on PLD. Plus each month one can meet with a study coordinator and relay any new symptoms that one may have experienced.

The Mayo Rochester Minnesota is trying (a huge endeavor, not yet done due to funding) for Florida Mayo and Arizona Mayo as two sub-sites. And they need all PLD participants willing to come these sites for monthly injections.

Pasireotide + Tolvaptan has ↑ effectiveness when given together

The combination of both medications has decreased cyst production in PLD/PKD much better than either medication given alone. Pasireotide is also more effective than octreotide for PLD cyst reduction.

More information on pasireotide

Avoid before surgery After surgery Pain relief
Octreotide article Octreotide
Liver resection article Liver resection
PLD Lecture PLD Webinar PLD Webinar Slides
We are  sharing our experiences with PLD Diet, an adjunct diet to consider  trying to complement a physician's prescribed medical therapy. Think  about testing this only with your doctor's prior knowledge, who can  adjust it, according to your own uniqueness by adding to your current  treatment.

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