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Scottish Institute of Reflexology

PRIMARY BILIARY CIRROHOS

Primary Biliary Cirrhosis

Case Study  - Primary Biliary Cirrhosis

The old school network is now in action. 60/70 seems to bring about the need to see who is still around and how fit.  Quite a number are in touch in the NE - and increasing- without the aid of ‘Friends re-united.’  Unbelievable that we’ve known each other over 60 years. One friend has a sister who has the above dis-ease, which has nothing to do with being brought up over a pub.

This friend is in her 70s, happily married, with a fairly healthy husband and 2 grown-up children.  She worked as a dental assistant and specialised in children with special needs. A contented sober life, full of fun and a great sense of humour, then PBC was suspected 25yrs ago years ago.

D. had had osteo-arthritis diagnosed in childhood and 25 years ago her shoulders ‘seized up’ and she was given a cortisone injection, gaining some relief. The blood test also showed anti-mitochondrial antibodies, an indicator of PBC.  It was borderline so nothing further was done. 10 years later D. presented with pruritis (itchy skin) and this time the blood test showed a definite positive and she was given URSO, a drug which slows the progress of the disease. At present there is no known cure. Biopsy is rarely performed as the liver is a very large organ and can be ‘hit or miss’. At this time a research consultant mentioned to the liver consultant that she was looking for a large cohort for a project and he suggested his PBC patients. 40, including D. were willing to participate.  Since then, D says, PBC has taken over her life!  5 years ago cardiomyopathy was also diagnosed.  This, too, is considered to have auto-immune origin.  It also precludes the possibility of D having a liver transplant.  At one point D had a cholecystecomy.  She says a microscope was needed to see the stone. Other presenting symptoms, now, are Sjogren’s syndrome - lack of body secretions (dry eyes and mouth), physical fatigue, when she can hardly move her legs and arms, pain, shortness of breath, occasional gout and low blood pressure each night.  Her appetite is fairly good but she is unable to tolerate spicy of fatty food, and, recently, alcohol. She has found that her memory is much worse.

After talking to D about reflexology she said she’d love a session and I began to visit for treatments at the end of 2004, and try to go over each month.  My aspirations were to aid relaxation and, perhaps, alleviate symptoms of discomfort.

D. is taking steroids, which increase one’s appetite and tend to fluid retention, thus a more rounded body.  She has very little energy, mostly taken up with frequent visits to clinics etc for blood tests and monitoring.  Her appetite is pretty good and the diet is a healthy one (I get a delicious meal when I go over to give treatment.) and she enjoys a glass of wine most days. She always has a smile.

  She loves the session and has found that the muscle fatigue is lessening and she feels generally improved for several days afterwards.  This seems to be increasing. There is no effect on the pain which is not unbearable.

A cousin is looking into the family genealogy and found that a Gr/Gr/Grandmother died in 1899 with the death certificate showing symptoms very like those of PBC

                                                                                                                                                                                  

 

PBC appears to be an auto-immune disease, when the body’s antibodies, on the hunt for foreign substances, fail to recognise a normal part of the body and proceed to attack and destroy it. It occurs mainly in women, between 40 & 60. 90% of sufferers are female.  There appears to be no known cause – hence ‘primary.’ There may be a family history, (her parents died from the effects of cancer.)  Infectious agents have not been ruled out.  The usual causes of cirrhosis are hepatitis and alcohol abuse. The incidence, world-wide, is approx. 5/100,000, and prevalence appears to be similar in different regions.

Presenting symptoms are pruritis (itching), lethargy, general malaise followed by jaundice – yellowing of the eyes and skin- due to blocked bile ducts.

Blood test show raised levels of normal bile duct enzymes activity and enzymes produced by the hepatocytes (the predominant liver cell type.)  The serum bilirubin level (excess of which causes the yellow pigmentation) becomes raised as the illness progresses.  Liver biopsy, if positive, is, histologically, classified in 4 stages.

Progression through the stages may be a few months to 20 years, and ends in liver failure.

When the serum bilirubin reaches 6mg/dl the average life expectancy is about 2 years.  At this point the patient may be considered and screened for liver transplantation.

There are ongoing studies and D. is part of a research group in Newcastle, to try and find effective drug therapy.  Vitamins and calcium are needed to prevent osteoporosis; a common complication as the ability for fat soluble vitamins to be absorbed is compromised. Bile breaks down the fat globules in the digestive process thus aiding the body to absorb Vits. A D E and K necessary for bone strength.

Colchicine may inhibit fibrosis.  Lab studies show improvement, but not the signs and symptoms.  Similarly with D-penacillamine, a drug which may be toxic. (This is also used in RA and monthly monitoring is required.)

Corticosteroids seem to have no effect at all and may aggravate osteoporosis.  There are studies on other drugs.  For this reason D has been referred to the bone density clinic for possible strontium treatment as this is thought to help the condition.

D’s list of drugs include: Bisoprolol – a beta-blocker- and aspirin and Rbsartin for her heart

Alopurinol - gout

Fluroxetine – an anti-depressant which she did not want – saying she does not get depressed, but he consultant insisted as depression can be sever with liver problems.

Ubiquinone 200 – an anti-oxidant

Ursodeoxycholic acid – use if this shows improved liver function but increase in survival rate has not been demonstrated

Omniprazole – for gastritis

Calcium O2 – osteo-porosis

Dihydrocodeine - analgesic

Rosuvastatin (rozex / metranidazole) anti- pruritic.

The members of the research group in Newcastle meet regularly with one of the biliary team and are kept up to date with treatments available.  Surgeons in Japan are now doing live donor transplants, as a whole liver is not required and there are few cadavers available.  This procedure, unfortunately, means that 2 lives are at risk. 

There also appears to be a breakthrough for regeneration of liver bile ducts. (  Coming to a hospital near you?)

(0ne member of the group has had 2 transplants. She is petite and has a dislike of alcohol.  One day, after the second operation, she shocked her husband saying she ‘could murder a pint’. He got her a half which she thoroughly enjoyed. This liver had come from a teenage youth who had enjoyed a drink – or 3.)

Further information can be obtained by Googling ‘Primary ….’ Much of this is outdated and is an American site.

(Read “The P.B.C. Foundation” page**)

Cecily Mills M.S.I.R.