Some PLD Trials
Octreotide Side Effects
Response
The response to octreotide is varied. Some have multiple side effects. Some experience no side effects whatsoever. Some have liver size reduction and some do not.Octreotide Somatostatin LAR
A 2014 study in the PKD animal model shows Tolvaptan + octreotide to have a synergistic effect on cyst formation, better than either one alone.It is given every 28 days deep intramuscular by injection. Some side effects from taking octreotide LAR can be:
diarrhea
gallstones
abdominal pain
flatulence
malabsorption
extreme fatigue
back pain
headache
nausea
dizziness
pain at injection site
thyroid difficulties
blood sugar irregularities
slow heart beat
bleeding problems
fainting from vagal vaso response
Lump and pain at injection site
Bring everything to room temperature: dilutant, powder, needles, syringes. Use an alcohol wipe to clean the top of the powder. For better visualization, remove all stickers from the powder bottle. Insert a large bore needle into the dilutant liquid. Without inverting the bottle, draw up the liquid and inject it into the powder. Allow it to soak the octreotide powder for a full 5 minutes undisturbed. Then gently whirl the contents of dilutant and powder together, being careful to not allow the mixture to come into contact with the top of the bottle. Do NOT turn the bottle mixture upside down. By inverting the bottle the tiny little timed release ball like polymers can break. This prolongs the absorption of octreotide over 28 days, much like the little colored beads that can be seen in certain time released medications. When the mixture appears to be dissolved, carefully swirl once again and fill the syringe. Prick the skin quickly and place the injection needle all the way to the hub of needle deep within the tissue. Give the injection and massage the area for a bit. Repeat on the other side. Massaging helps the medication to absorb rather than staying just locally. Use a Band-Aid over the site, in case of bleeding.
Rapid bowel transit time
Three (3) patients in the initial Italian trial had severe watery diarrhea that resolved after the first dose If this should occur, try eating blackberries or a small amount of cheese. Blackberries and cheese are two foods I have noticed that tend to be binding.
Bruising or prolonged bleeding time
To correct any increase in bleeding time, I tried the following dietary modifications for one month: 3 cups of steamed broccoli for breakfast (drizzled with lemon juice one day and finely chopped garlic another day); increase leafy greens; 1 ounce of low fat cheese; a half cup of plain yogurt with added acidophilus powder. To correct a low vitamin K, try a poached egg yolk twice a week, continue with these modifications then re-test your bleeding time at the one month mark. The fat soluble vitamins are not well absorbed with malabsorption. Vitamin K is manufactured in the intestines.Leg cramps
Stretch at night by pressing my heels downward and pointing my toes upward to prevent Charlie Horse like cramps. This too has not been a problem since the diarrhea stopped and I started taking vitamin E about twice a week at night just before bed. More on leg cramps.
Tremors
Sometimes if I forget to eat, I get slight tremors of my hands, they develop a fine shake or tembling. This might be related in part to aging. I drink or eat carrot juice or carrots and this seems to help. It is a feeling that I do not welcome.
Warnings and Precautions
Patients should be monitored periodically.
Hypoglycemia or hyperglycemia may occur. Blood glucose levels should be monitored when Sandostatin LAR Depot treatment is initiated or when the dose is altered. Antidiabetic treatment should be adjusted accordingly.
Hypothyroidism may occur. Baseline and periodic assessment of thyroid function (TSH, total and/or free T4) is recommended.
Bradycardia, arrhythmia, conduction abnormalities, and other EKG changes may occur. The relationship of these events to octreotide acetate is not established because many of these patients have underlying cardiac disease. Use with caution in at-risk patients.
Octreotide may alter absorption of dietary fats. Monitoring of vitamin B12 levels is recommended during therapy with Sandostatin LAR Depot. Patients on total parenteral nutrition (TPN) and octreotide should have periodic monitoring of zinc levels.
Drug Interactions
Drug Interactions:
The following drugs require monitoring and possible dose adjustment when used with Sandostatin LAR Depot:
cyclosporine
insulin
oral hypoglycemic agents
beta-blockers
bromocriptine
True vertigo, dizziness, room spinning
Avoid eating gummy bears, jelly like candy, dots, jujubes, fruit roll ups, fruity candies that are chewy. I experienced one severe episode where the room was spinning. I was sitting still. I had to crawl to the bathroom on all fours because I became extremely nauseated and vomited until there was nothing left but the dry heaves. Eventually this passed. The vertigo episode has not been repeated. I don't know if it is associated with jelly candies. It occurred after I had eaten this.
Increasing tiredness with grumpiness
I drink the juice of one lemon each morning or some mornings dilute lemon juice in water to make a quarter cup. I take one drop of solé in a full glass of mineral water daily. I try to get essential amino acids daily by drinking freshly pressed cabbage juice. I try to get all my essential fatty acids by taking either hemp seed oil capsules or chia seed oil capsules or eating purslane. Because of my cystic liver I cannot take flax or fish oil. It increases my liver growth. Sometimes I take vitamin B complex and folic acid. I do not take vitamins after 2 p.m. as these seem to prevent me from getting a full night's sleep. If I am especially restless and unable to sleep, I will take a hot bath, and calcium citrate (citrate exerts a slight alkalinity) at night or one ounce of grape juice diluted with two ounces of mineral water. This seems to activate my own precursor to melatonin, tryptophan. Sometimes I just take naps in the afternoon. I try to walk or go to the gym in the mornings when I seem to have my most energy. As the sun goes down so do I. My husband notices that immediately or for about 3 days following my injections I am really tired and require afternoon naps. He thinks this has been increasing. When I get tired I become very cranky.
I had been on octreotide 40 mg to reduce my polycystic liver disease for several years. It was very effective. However
after taking octreotide for close to 7 years at a reduced dose and at a higher dose, it has been a mutual decision
to discontinue octreotide. The numerous side effects I experienced made it necessary to stop octreotide. These side effects are not the
same for everyone, nor is shrinkage of a PLD liver. The side effects and the shrinkage are unique to each individual.
Both researchers and friends have commented on my unusually thin appearance that seemed to be getting
thinner. I had severe episodes of
watery non-bloody diarrhea
first doses my bleeding time became prolonged, generalized bruising increased.
Doctors attributed this to malabsorption, a known side effect of octreotide.
Researchers dropped octreotide dose by half for a month.
↑ Vaso-vagal episodes
↑ Kidney infections
Octreotide interferes with many of the enzymes utilized by the body. Additionally octreotide has hormone receptor site blockers that block not only hormones, but also blood sugar regulating hormones, pancreatic enzymes, gastrin, and much more. This is one reason octreotide has been useful for diminishing breast cancers, liver cysts, neuroendocrine tumors and other tumors that contain hormone receptors triggering their growth.
