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.
Are there any PLD clinical trials?
Calling all participants who live near the Mayo Clinic, Rochester, Minnesota USA. There 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.
Some individuals will receive a placebo. I received placebo in the first year of the octreotide clinical trial. Placebo wasn't too bad. I got free check ups every 6 months by the experts on PLD. In fact it was pretty good getting the PLD experts to check me out. Plus each month I could email them with any new symptoms that I 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 participants willing to come these sites for monthly injections.
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