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Vedolizumab exprience


#1

Hello everyone im 21 y.o ,3rd year medical student from israel , on 2014 i was diagnosed with psc disease after examination with mrcp and liver biopsy ,my psc involved also ulcerative colitis , i was treated with many different unsuccesful drugs since 2014 ,on january 2017 i was hospitalized due to abdominal abccess ,since january my treatment is intravenous vedolizumab (entyvio ) different researches proved that vedolizumab safety for psc if someone has any idea ,experience about vedolizumab plz i will be glad to hear more , thanks .


#2

Hello Fawzi,

I looked up vedolizumab and it says: ENTYVIO is a prescription medicine used in adults with moderate to severe
ulcerative colitis (UC) or Crohn’s disease (CD).
https://www.entyvio.com/vedolizumab?

utm_source=google&utm_medium=cpc&utm_campaign=branded&gclid=EAIaIQobChMIo7qO9IyD1AIV00sNCh2n4gasEAAYAiAAEgKYs_D_BwE

I do not understand why they gave that to you? But I did find this information out.

Alkaline phosphatase (ALP) is a key liver health marker of PBC.
Lowering your ALP level may reduce the risk of needing a liver transplant. So we are all sitting here asking how can we do this…
Alkaline phosphatase (ALP) is a protein found in all body tissues. Tissues with higher amounts of ALP include the liver, bile ducts, and bone. A blood test can be done to measure the level of ALP. A related test is the ALP isoenzyme test.(Source)

Overview
A category of enzymes produced mainly in the liver and bones, alkaline phosphatase enzymes are responsible for splitting off the acidic mineral phosphorus, creating an alkaline pH balance. According to Jeffrey E. Kaslow on Dr. Kaslow.com, high blood levels of alkaline phosphatase could be indicative of bone or liver disease. In the case of children or adolescents, high alkaline phosphatase levels may simply reflect rapid bone growth. If your blood test reveals elevated alkaline phosphatase levels, you will need to discuss potential underlying conditions with your doctor. Some foods may also lower alkaline phosphatase.

Fish
According to Kaslow, a deficiency in vitamin D may be responsible for a high level of alkaline phosphatase. Rickets, a condition in children, is related to a vitamin D deficiency. For this reason, foods high in vitamin D may decrease your levels of alkaline phosphatase. According to World’s Healthiest Foods, certain types of fish are high in concentrated vitamin D. These include salmon, sardine and shrimp.

Milk
Vitamin D milk, or 2 percent, is another very good source of vitamin D, reports World’s Healthiest Foods. An 8-oz. glass of milk contains 24.4 percent of the daily value of vitamin D. In addition, the milk protein casein appears to have a lowering effect on alkaline phosphatase. A study published in “The Journal Of Nutrition” reports that dietary casein demonstrated an inverse relationship to alkaline phosphatase activity in rats. The study was conducted by M. Ross and W. Batt of the Biochemical Research Foundation in Newark, Delaware.

Cashews
Increasing dietary copper intake may play a role in decreasing ALP levels. World’s Healthiest Foods says insufficient intake of this mineral can lead to increased fecal free radical activity and fecal water alkaline phosphatase levels. These increases are considered a risk for colon cancer, reports World’s Healthiest foods.

By increasing your copper consumption, you may be able to lower your alkaline phosphatase activity. World’s Healthiest Foods notes that cashews are particularly rich in copper, with 1/4 of a cup delivering 38 percent of the daily value. Talk to your doctor about appropriate steps to take for balancing your ALP activity.
https://www.undergroundhealth.com/alkaline-phosphatase/

I wonder if we start eating a healthier diet of fresh fruits and vegetables how much would that help? I do not eat fried foods.

Let me know what you find out & good luck! We all need it. :innocent:
Pam


#3

Hello Pamela;

I believe that information that given by you is so important because even my limited experience tell me how sunbathe is good for my health. (i feel healthy when i have opportunity to sunbathe)
Also, i know that incidence rate for psc is high in northern countries. In this week i am gonna eat foods you mentioned (fish, milk, cashews…)

I also have add another experiential suggestion. I dont apply this yet but someone told me hyperbaric oxygen therapy is really very effective treatment for ulcerative colitics. (she has not psc so i’m not sure how efficiency for psc is but i believe that it should be tried.)


#4

Hello Code,

I am a patient with PBC and the information I gave above is from Google, that’s why I left the two links. I am not too sure about using hyperbaric oxygen, have you read about it yet?

Hyperbaric oxygen therapy, or HBOT, is a type of treatment used to speed up healing of carbon monoxide poisoning, gangrene, stubborn wounds, and infections in which tissues are starved for oxygen.

If you undergo this therapy, you will enter a special chamber to breathe in pure oxygen in air pressure levels 1.5 to 3 times higher than average. The goal is to fill the blood with enough oxygen to repair tissues and restore normal body function.

Facts about hyperbaric oxygen therapy
Hyperbaric oxygen therapy was first used in the U.S. in the early 20th century. This was when Orville Cunningham used pure oxygen to successfully treat someone dying from the flu. He developed a hyperbaric chamber, but dismantled it after his use of the therapy for other conditions failed.

The therapy was tried again in the 1940s when the U.S. Navy used hyperbaric oxygen to treat deep-sea divers who had decompression sickness. By the 1960s, the therapy was also used to combat carbon monoxide poisoning.

Today, it’s still used to treat sick scuba divers and people suffering from carbon monoxide poisoning, including firefighters and miners. It has also been approved for more than a dozen conditions ranging from burns to bone disease:

Carbon monoxide poisoning

Cyanide poisoning

Crush injuries

Gas gangrene (a form of gangrene in which gas collects in tissues)

Decompression sickness

Acute or traumatic inadequate blood flow in the arteries

Compromised skin grafts and flaps

Infection in a bone (osteomyelitis)

Delayed radiation injury

Flesh-eating disease (also called necrotizing soft tissue infection)

Air or gas bubble trapped in a blood vessel (air or gas embolism)

Chronic infection called actinomycosis

Diabetic wounds that are not healing properly

Medicare, Medicaid, and many insurance companies generally cover hyperbaric oxygen therapy for these conditions, but may not do so in every circumstance. Check with your insurance plan before treatment.

How does HBOT work?
HBOT helps wound healing by bringing oxygen-rich plasma to tissue starved for oxygen. Wound injuries damage the body’s blood vessels, which release fluid that leaks into the tissues and causes swelling. This swelling deprives the damaged cells of oxygen, and tissue starts to die. HBOT reduces swelling while flooding the tissues with oxygen. The elevated pressure in the chamber increases in the amount of oxygen in the blood. HBOT aims to break the cycle of swelling, oxygen starvation, and tissue death.

HBOT prevents “reperfusion injury.” That’s the severe tissue damage that happens when the blood supply returns to the tissues after they have been deprived of oxygen. When blood flow is interrupted by a crush injury, for instance, a series of events inside the damaged cells leads to the release of harmful oxygen radicals. These molecules can do damage to tissues that can’t be reversed and cause the blood vessels to clamp up and stop blood flow. HBOT encourages the body’s oxygen radical scavengers to seek out the problem molecules and allow healing to continue.

HBOT helps block the action of harmful bacteria and strengthens the body’s immune system. HBOT can disable the toxins of certain bacteria. It also increases oxygen concentration in the tissues. This helps them resist infection. In addition, the therapy improves the ability of white blood cells to find and destroy invaders.

HBOT encourages the formation of new collagen (connective tissue) and new skin cells. It does so by encouraging new blood vessel formation. It also stimulates cells to produce certain substances, like vascular endothelial growth factor. These attract and stimulate endothelial cells necessary for healing.

Types of hyperbaric oxygen chambers
Hyperbaric oxygen therapy uses 2 types of chambers:

Monoplace chamber. This is a chamber built for one person. It’s a long, plastic tube that resembles an MRI machine. The patient slips into the chamber. It is slowly pressurized with 100% oxygen.

Multiplace chamber. This chamber, or room, can fit two or more people at once. The treatment is largely the same. The difference is that people breathe pure oxygen through masks or hoods.

What happens during HBOT
Only a healthcare provider should prescribe hyperbaric oxygen therapy. A number of hospitals offer hyperbaric oxygen chambers. People relax, sit, or lie comfortably in these chambers and take deep breaths in sessions that last up to 2 hours.

Your ears may feel plugged as the pressure is raised, like when you’re in an airplane or the mountains. Simple swallowing or chewing gum will “pop” the ears back to normal hearing levels.

Your blood carries the extra oxygen throughout the body, infusing the injured tissues that need more oxygen so they can begin healing. When a session is complete, you may feel lightheaded. Mild side effects include claustrophobia, fatigue, and headaches.

Several sessions may be needed, so check beforehand to see whether your insurance company, Medicaid, or Medicare covers the cost.

Precautions
Hyperbaric oxygen therapy is not for everyone. It should not be used by people who have had a recent ear surgery or ear trauma, a cold or fever, or certain types of lung disease.

The most common complication after HBOT is trauma to the middle ear. Other possible complications are eye damage and sinus problems. In rare, severe cases, a person can get oxygen poisoning. This can lead to seizures, fluid in the lungs, lung failure, or other problems. Considering the possible risks and benefits, the decision to use hyperbaric oxygen therapy must be carefully made after a detailed discussion with your healthcare provider.

http://www.hopkinsmedicine.org/healthlibrary/conditions/physical_medicine_and_rehabilitation/hyperbaric_oxygen_therapy_134,147/

I do not see where this will help with PBC in less I missed something what do you think? I am looking forward to hearing from you.

You can also call the American Liver Foundation @ 1-800-■■■■■■■■ and they can provide you with news and current information!

Pam


#5

Hi Pam,

I’m curious about your diagnosis. You say you have PBC? Primary Biliary Cholangitis? It was formerly called Primary Biliary Cirhossis but the name was recently changed. The reason I ask is because this forum is for people with PSC - Primary SCLEROSING Cholangitis. Similar diseases but PSC is usually related to IBD, has an increased cancer risk and does not respond to URSO like PBC does.

Crewmom


#6

http://casereports.bmj.com/content/2017/bcr-2017-220351.long


#7

Hi again Pamela;

I didnt mention a approved treatment. there is no cure so we -as patients- always try something different. maybe oxygen therapy or ozone therapy is useless but my perspective about alternative medicine should give a chance them. maybe someone in here tried this therapy before and he/she can tell us his/her experience.


#8

Hi wanted to tell you about a drug that lowered my alp from 690 two years ago to 156 my last lab work. I take colchicine 0.6mg twice daily. I have been also taking urso but only recently, don’t know if colchicine will help others but it has definitely brought my alp, ast and alt numbers to normal. Hope this helps. Beth


#9

Hello guys my psc also involve uc and i take vedolizumab as treatmet but i still have diarrhea around 5 times a day im so weak i have anemia headeche i cant maintian normal life if someone have exprience how to reduce diarrhea in this case plz let me know thanks


#10

I had to regularly take Imodium tablets during my years with PSC. Start with 2 then you can have two more spread over 24 hours. Make sure you don’t take magnesium near meal times. It only makes diarrhea worse. I would take my magnesium at 3 pm and bedtime each day which helped a lot.

Mark


#11

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328239/ ( I didnt read all article yet.)

I think i will try hyperbaric oxygen or ozone therapy. we will see whether it works.


#12

[Crewmom]
Yes you are right the name has changed to PSC when I asked my doctor why he said because the word cirrhosis was in the name PBC and we did not all have cirrhosis of the liver.

I just found this out.


#13

Pamela,
Your statement needs a little more clarification. I hope this helps.

  1. Primary Bilary Cirrhosis (PBC) is an autoimmune disease that causes progressive destruction of the bile ducts.
  2. Primary sclerosing cholangitis (PSC) is a chronic, or long-term, disease that slowly damages the bile ducts. the bile ducts become blocked due to inflammation and scarring or fibrosis. This causes bile to accumulate in the liver, where it gradually damages liver cells and causes cirrhosis, or fibrosis of the liver. As cirrhosis progresses and the amount of scar tissue in the liver increases, the liver slowly loses its ability to function. The scar tissue may block drainage of the bile ducts leading to infection of the bile.

PSC advances very slowly. Many patients may have the disease for years before symptoms develop. Symptoms may remain at a stable level, they may come and go, or they may progress gradually. Liver failure may occur 10-15 years after diagnosis, but this may take even longer for some PSC patients. Many people with PSC will ultimately need a liver transplant, typically about 10 years after being diagnosed with the disease. PSC may also lead to bile duct cancer. Endoscopy and MRI tests may be done to monitor the disease.

Bottom line is that with PSC, you are starting out with a perfectly healthy liver, but as the disease causes blockages/strictures in the bile ducts, bile cannot flow at a normal rate out of the liver, so as the rate of bile flow decreases due to the disease cells of the liver begin to die which causes cirrhosis which eventually leads to transplant. You can get bile duct cancer with PBC and PSC, but with proper management and regular endoscopic brushings during ERCP’s they can identify that early on and deal with it.

Mark