PBCers March 1998 Survey Summary Results
Summary of our 1998 PBCers survey. Results do not correspond with section/question order on our original survey.
The following results are based on the number that answered the
the question, not the total surveys used. Some participants did not
answer all questions, especially those of sensitive nature. Some of
the questions had multiple answers.
SECTION A Introduction
*131 surveys were used to calculate the results. All participants presently
have PBC or PBC post transplant.
6% of those surveyed have an overlapping "other" liver disease.
AIH, Hep A-B, and Hep C. 2 were diagnosed first with PBC.
94% do not have overlapping "other" liver disease.
SECTION B Personal
Survey participants 92% female 8% male
Youngest age 27 and the oldest is75. 56% median age group is 45 to 55
years of age.
Height: 4'10" to 6'2" 65% median height 5'3' to 5'7" (most common height
was 5'5")
Weight ranges 90 to 304 pounds. Less than 150 lbs 36%
150 lbs to 200 lbs 40% over 200 lbs 24%
Natural Hair Color (before gray or chemicals)
Light 18% Medium 54% Dark 28%
Skin Color (without tan) Light 44% Medium 48% Dark 8%
SECTION C Pesticides, chemicals, smoking, alcohol & drugs
As a child or young adult did you live near a: Dump site 14%
Chemical factory 23% Mines 9% Unknown 33% No 21%
Were your parents exposed to a large amount of pesticides prior to your birth?
Yes 7% No 38% Unknown 55%
As a child or young adult were you exposed to a large amount of pesticides?
Yes 10% No 63% Unknown 27%
Were your parents exposed to a large amount of chemicals such as Trichlorethane &Methylethylketone prior to your birth?
Yes 5% No 33% Unknown 62%
Were you exposed to a large amount of chemicals such as Trichlorethane & Methylethylketone? Yes 5% No 57% Unknown 38%
As a child or young adult did you drink well water?
Yes 31% No 63% Unknown 6%
Do you drink well water now? Yes 22% No 78%
Smoking
Are you presently a smoker? Yes 21% No 79%
Have you ever smoked? Yes 47% No 53%
Late teens was the average age for starting to smoke, and majority smoked
10+ years. Average amount smoked per day was 1 1/2 pack. One PBCers
listed 125, but I believe it was a misprint.
Prior to your birth, were your parents smokers? (cigarettes, pipe or cigars)
Yes 86% No 11% Unknown 3%
Did your parents smoke after your birth? (cigarettes, pipe or cigars)
Yes 87% No 10% Unknown 3%
Were any of your grandparents smokers? (cigarettes, pipe or cigars)
Yes 66% No 15% Unknown 19%
For most of you life have you lived with a smoker?
Yes 56% No 44%
Alcohol
Do you drink alcohol? Yes 29% No 71%
If you do NOT presently drink alcohol, did you ever drink alcohol?
Yes 67% No 33%
Majority started drinking in teen years, drinking beer and wine, at least
2 drinks per week. Maximum listed was 1 six-pack per day.
Prior to your birth, did your parents abuse drugs or alcohol?
Yes 20% No 72% Unknown 8%
Of those parents abusing drugs or alcohol:
Alcohol 71% Drugs 25% Both 4%
Did any of your grandparents abuse drugs or alcohol?
Yes 41% No 59%
Do any of your siblings abuse drugs or alcohol?
Yes 45% No 55%
Have you ever used recreational drugs such as marijuana?
Yes 39% No 61% Average age started using drugs was early 20's.
Most common drug marijuana 79% Occasional usage was most common.
3% currently use recreational drugs.
Have you ever excessively used prescription drugs?
Yes 16% No 84% Most common was diet pills
SECTION D Ethnic Heritage & Geographic
What is your ethnic heritage? The 3 most common were Northern European,
Irish and German
62% listed USA as the country for themselves and parents. The survey didn't
work for the geographic portion.
As a child were you born in:
Rural area 9% Large City 42% Small City/town 46%
Unknown 3%
Was your mother born in:
Rural area 16% Large City 36% Small City/town 44%
Unknown 4%
Was your father born in:
Rural area 17% Large City 47% Small City/town 26%
Unknown 10%
SECTION E Medical History
What is your family birth order?
Oldest child 37% Middle child 26% Youngest child 30%
Unknown 7%
How many siblings do you have? 1 sibling 22%
2 siblings 31% 3 siblings 27% Over 3 18% unknown 2%
3% were premature at birth
7% were jaundice at birth
88% had the majority of childhood immunizations
85% had Tetanus boosters.
(The following questions had multiple answers.)
Did you have:
Mumps 53% Rubella German Measles 50% 3 Day measles 38%
Chicken Pox 73% Mononucleosis 7% Strep Throat 46%
Rheumatic Fever 3% Typhoid Fever Scarlet fever 3%
Heart mummer 19% Polio Unknown 8%
As a child did you have MORE than normal amount of
Colds 23% flu 21% bronchitis 15% viral infections 23%
frequent boils or cysts 15% Unknown 26%
60% had tonsils removed
8% had blood transfusion
As a child did you have: mycoplasmic pneumonia 19% "walking"
pneumonia 24% Both 4% Unknown 11% Wrote in No 42%
Majority 1 time
As an adult did you have: mycoplasmic pneumonia 3% "walking"
pneumonia 26% Both 11% Unknown 3% Wrote in No 57%
Majority 1 time
33% have suffered with Migraine headaches in the past.
44% of Migraine headaches decreased since diagnosis 33% Increased
23% No change
52% have suffered with Urinary Tract Infections (UTIs)
38% suffered frequent UTIs 17% now suffer UTIs.
Have you ever suffered from:
Shingles-Herpes Zoster 26% Herpes simplex-cold sore 43%
Herpes genitalis 13%
Have either of your parents suffered from:
Shingles-Herpes Zoster 23% Herpes simplex-cold sore 33%
Herpes genitalis 4%
38% experienced severe food poisoning.
60% suffer from regular sinus drainage. 43% suffer from regular sinus
infections. 34% of their parents suffer from regular sinus drainage and or
infections.
Gall Bladder
31% have suffered Gall bladder problems. 38% have had their Gall bladder removed
When diagnosed with Gall Bladder disease did you have what doctors refer
to as the 4 "F"s? (Fat, female, over forty & flatulent)
Yes 49% No 51%
How long did you suffer gall bladder pain or problems before diagnosis?
Average 1 year
Did either parent have their gall bladder removed or suffer gall bladder
problems? Yes 43% No 52% Unknown 5%
Did either grandparents have their gall bladder removed or suffer gall bladder
problems? Yes 30% No 13% Unknown 57%
Did any of your siblings have their gall bladder removed or suffer gall bladder
problems? Yes 27% No 69% Unknown 4%
13% have been told they have a Thyroid Condition, and 19% said a family
member has a thyroid condition.
24% have an artificial material implanted in their body (screws/pacemaker/silicon) Implants have been in an average of 10 years and have not been removed.
85% have gold fillings, silver fillings, mercury fillings, bridges or crowns
Majority of the material is silver & gold. Average is 20 years and most have
not been removed.
SECTION F Family Liver Disease and other Autoimmune Diseases
5% had a family member with PBC
27% had a family member with another liver disease.
Did either of your parents have ANY of the following diseases: (List all
that apply) Lupus, Rheumatoid Arthritis, Asthma, Allergies, Diabetes,
Sjogrens, MS, Raynauds, Osteoporosis, Fibromyalgia, Psoriasis, Thyroidism (Hypo/hyper), Shingles and Other Autoimmune Disease.
Rheumatoid Arthritis 34%, Allergies 47%, Diabetes 30%, Asthma 26%
Shingles 26% & Osteoporosis 21% (Other diseases were less than 10%)
62% of the grandparents had 1 or more of the above diseases.
48% of the siblings have had 1 or more of the above diseases.
21% of the their children have been diagnosed with 1 or more of the above
diseases.
SECTION G Stress
45% considered their life stressful as a child.
86% considered their life stressful before the PBC diagnosis.
63% consider their life stressful NOW.
SECTION H Personality
56% considered themselves an extrovert and show feeling/emotion depending
on the situation.
SECTION I Diet
42% considered their diet healthy or average before PBC diagnosis.
21% are vegetarians. 69% consider their diet healthy or average now.
64% eat meat 2 to 5 times per week.
SECTION J Liquids
31% drink at least 8 - 8oz glasses of water per day.
60% drink coffee daily. Average is 2 cups per day.
36% drink tea. Average 4 cups per day.
47% drink soft drinks. Average 1 glass/can per day.
SECTION K Other Diet related
How much caffeine is in your diet?
None 7% Small amount 38% Average amount 46%
Large amount 3% Don't know 6%
73% are now more sensitive to certain foods. Some of the foods
listed were fatty foods, fiber, spicy, shell, meat, fruits & milk products.
60% crave chocolate. Average small amount daily.
54% crave sweets.
21% crave acid type foods such as tomatoes.
59% crave salty type foods.
SECTION L Weight
As a child were you: Thin 26% Overweight 30% Average 44%
During MOST of your life have you been:
Thin 19% Overweight 52% Average 29%
47% have taken diet pills. (over-counter or prescription) Currently 8% are
using diet pills and 46% have used products such as Slim Fast
At time of diagnosis were you:
Overweight 49% Underweight 10% Normal 41%
45% have gained weight since diagnosis 22% feel weight gain is due to steroids. 87% feel the majority of weight gain is in stomach area.
SECTION M Exercise
57% exercise regularly. 40% of those exercise daily. 1
5% exercise 3 times weekly. 22% exercise weekly.
13% exercise occasionally 10% do not exercise
SECTION N Clothing
42% are now more sensitive to clothing. 54% feel uncomfortable
with elastic. 41% have changed the type of clothing they wear for
comfort.
SECTION O Females Only
How old were you when you started menstruating?
8 to 11 yrs 18% 12 yrs 29% 13 yrs 22% Over 13 31%
68% had menstrual problems
65% Normal cycles
Have you ever suffered from any other the following: (Multiple answers)
Heavy bleeding 43% Light Bleeding 13% Both heavy and light 39%
Severe cramps 56% Mood swings 60% Migraine headaches 26%
Bloating with weight gain 60% Light headiness during bleeding 21%
Irregular cycles 39% Large clots 65%
28% suffered other menstrual abnormalities such as cysts, fainting, blurred
vision and endeometriosis
31% said their mother had menstrual problems. 86% didn't know if their grandmothers had menstrual problems. 18% said their sister had menstrual
problems.
11% take birth control pills now. 86% have taken birth control pills sometime
in their life.
89% have been pregnant and the average was twice. 2 were listed as having
multiple births. The average age of the first full term pregnancy was 20 to 25
years of age.
86% had normal pregnancies, and the average was 2.
31% suffered 1 miscarry. The majority were in early 20's. The youngest
was 13 and the oldest was 37. 22% stated their mother's had at least 1
miscarry.
41% had children born jaundiced.
23% had premature births.
27% had infertility problems. 66% of those underwent infertility
treatments, and 25% resulted in pregnancy.
42% are Pre Menopausal and 58% are Post Menopausal
Average age of onset of menopause was 42 to 48 years of age.
Symptoms experienced by those in menopause or post stage.
Hot flashes 36% Night sweats 31% Mood swings 31%
Osteoporosis 10% Headaches 18% Other 8%
40% have had a hysterectomy and the most common cause was
hemorrhaging 40%
36% stated their mother had a hysterectomy. 6% stated their grandmother
had a hysterectomy. The other 94% stated no or unknown. 17% stated their
sister had a hysterectomy.
46% use Hormone treatments
13% use the Hormone Patch 33% use Oral Hormones
4% have breast implants.
72% have a yearly mammogram. 18% abnormalities been detected in their mammogram. 9% had discharge from their breast. 13% had a breast biopsy.
27% had Fibrocystic Disease.
5% suffered breast cancer and 1 stated cancer was before PBC diagnosis.
Has family member had breast cancer:
7% mother 13% grandmother 4% sister
63% suffered frequent female infections. 86% stated no or did not
know if their mother had frequent female infections.
Have you ever had any type of female disorder such as: Displaisa 11%
Ovarian cysts 19% Endometriosis 22% Other 9%
SECTION P Men Only
40% had prostate problems.
10% had prostate surgery.
40% had male specific surgeries.
Other "For men only" question results are included in other sections.
SECTION Q Sexual Activity
How old were you when you became sexually active? Youngest listed was
12 and the oldest was 34. 63% were between the ages of 17 to 21
63% had more than 1 partner.
Number of partners: 2-5 partners 27% 5 to 10 partners 55%
over 10 partners 18%
SECTION R Liver Biopsy & AMA
91% had a liver biopsy. Average 1-1 1/2 years since biopsy
18% had more than 1 biopsy.
31% experienced problems from liver biopsy such as pain, bleeding
or headaches. (Excluding mild soreness)
Biopsy helped diagnosis what PBC disease stage?
Stage 1 26% Stage 1-2 10%
Stage 2 16% Stage 2-3 12%
Stage 3 8% Stage 3-4 12%
Unknown 16%
72% had AMA blood test. 91% showed positive results
Average time since diagnosis is 1 to 2 years. The most common age at
diagnosis was 41 to 49 years of age.
What is your current PBC disease stage?
Stage 1 17% Stage 1-2 14%
Stage 2 8% Stage 2-3 10%
Stage 3 6% Stage 3-4 14%
Unknown 31%
SECTION S PBC Symptoms
88% experienced symptoms PRIOR to diagnosis.
Symptoms experienced prior to diagnosis.
95% Itching
92% Fatigue
52% Joint pain
15% Jaundice
33% Dry eyes
30% Dry mouth
60% Sleep disturbance
32% Pain in ribs
37% Pressure pain in liver area
15% Abdomen swelling
17% Edema (Ascities)
40% Small fat deposits (bumps) around eyes
35% Bleeding gums
20% Dental problems rotting, easily cracking, etc. (more than normal)
07% Mouth ulcers
40% Mood swings/crying for no reason
12% Shortness of breath
40% Memory problems "Fuzzy Brain"
42% Spider veins especially on back area of body or stomach
31% Skin rashes
40% Tingling in hands or feet
17% Darkening & texture change in skin
37% Red/bright pink splotches on palm of hands
42% Very dry flaky skin
45% Nail abnormalities such as ridging or humpshape nail, abnormal
thickening or growth.
52% Nausea or stomach problems
22% Ankles or legs swelling
15% Hair loss
45% Leg cramps
08% Other
71% have had symptoms increase since diagnosis.
Symptoms which have increased:
23% Itching
48% Fatigue
33% Joint pain
07% Jaundice
28% Dry eyes
25% Dry mouth
28% Sleep disturbance
24% Pain in ribs
35% Pressure pain in liver area
17% Abdomen swelling
10% Edema (Ascities)
07% Small fat deposits (bumps) around eyes
10% Bleeding gums
12% Dental problems rotting, easily cracking, etc. (more than normal)
07% Mouth ulcers
17% Mood swings/crying for no reason
07% Shortness of breath
33% Memory problems "Fuzzy Brain"
15% Spider veins especially on back area of body or stomach
12% Skin rashes
15% Tingling in hands or feet
10% Darkening & texture change in skin
15% Red/bright pink splotches on palm of hands
17% Very dry flaky skin
12% Nail abnormalities such as ridging or humpshape nail, abnormal
thickening or growth
17% Nausea or stomach problems
10% Ankles or legs swelling
25% Hair loss
23% Leg cramps
02% Other.
55% state some symptoms have decreased since their diagnosis. The most
common symptom to decrease was itching 39% and bleeding gums 27%
37% now experience symptoms that did not at diagnosis. The most common
were fatigue, sleep disturbance, memory problems, and leg cramps.
Fatigue
85% experience fatigue.
61% state it has increased since diagnosis.
42% state they sleep more since diagnosis, even with sleeping difficulties.
44% now take naps that didn't previously.
55% state they have difficulty sleeping even with fatigue.
57% take some form of prescribed or over-the-counter medication to help
them sleep.
Itching
84% suffer from itching.
47% take medication to help with the itching.
Most common were Benadryl, Questran & Rifampin
41% stated itching has increased since diagnosis.
53% state itching is worse in the heat or sun.
47% state itching is worse after eating certain foods.
12% stated itching is worse after eating salty foods.
31% stated itching is worse after eating fatty foods.
76% stated itching is worse when trying to sleep.
46% stated itching is worse when they perspire.
Memory Problems
31% noticed memory problems before diagnosis.
62% feel memory problems have increased since diagnosis.
63% have noticed memory problems since diagnosis.
Of those that have memory problems:
17% stated memory problems may be caused by age.
75% stated memory problem is short term.
64% have difficulty concentrating on TV, reading, and listening to conversations.
49% have difficulty with simple spelling or math.
54% have difficulty remembering the right words to use when speaking or
writing, and often use incorrect words.
58% have difficulty doing simple things that you have done for years?
59% have pain in their liver area.
Length of pain seemed to correspond with diagnosis.
55% stated pressure pain is increasing. On a scale of 1 to 10, the most
common pain level was 4
5% has pain in the spleen area.
52% stated they have pain in the shoulder area.
30% stated they have pain in the middle back area.
63% stated they have regular bowel movements.
26% stated they have regular diarrhea.
22% stated they have white or colored stools.
21% stated they have polyps.
40% stated they have had some type of cyst.
55% stated they have hemorrhoids.
SECTION T Blood Labs & Actigall/Urso
68% take Actigall, 26% Ursodiol and 6% do not take either.
Most common daily dosage is 900 mg, and the largest majority has
taken it for at least one year.
While taking Actigall/Urso did you blood labs:
Increase 11% Decrease 70%
No change 11% Both 8%
Most common it took 3 to 6 months for labs to decrease after starting
Actigall/Urso.
34% stated their symptoms increased when their labs increased.
40% stated their symptoms decreased when their labs decreased.
51% stated their symptoms did not change when their labs did not change.
41% have suffered side effects from Actigall/Urso
Some of the side effects include nausea, hair thinning, cramps, additional
fatigue, odd taste in mouth, burning pain and diarrhea.
82% feel the Actigall/Urso has helped in decreasing their lab results.
45% feel changing their diet has slowed the disease progress.
42% use alternative methods in combination with traditional medicine.
71% of those using alternative methods feel it has made the difference in their
lab results, and 71% feel it has slowed the disease progress.
SECTION U Other Medications
The average PBCer take 5 to 10 pills per day. This includes alternative
medicines. The lowest number of pills taken daily was -0- and the most
was 45 pills per day.
Taking your daily medications, do you:
Never miss a dose 31% Occasionally miss 54%
Often miss medications 11% Seldom take medications 4%
Do you take any of the following medications?
a. Metotrexate b. Prednisone c. Questran d. Calcium
e. Colchicine f. Daily aspirin g. Anti-inflammatory Medications
h. Pain medication i. Fosamax j. Rifampin k. Lactulose
L. Vitamin A, D /K
Yes 84% No 16%
Most common of the above medications was Calcium 63% and pain
medications was second at 36%
26% have suffered side effects from the above medications.
42% use alternative medical treatments. (Multiple types)
Acupuncture 8% Homeopathic 28% Herbs 58% Other 16%
Do you take: (May be multiple answer)
Milk Thistle 43% Dandelion root 20% Other 26% None 11%
25% take antidepressants (Sertraline, Trazodone, Paxil, Prozac, Zoloft)
43% was prescribed after the PBC diagnosis.
SECTION V Other Conditions and Diseases
The following are conditions associated with PBC. Are you currently diagnosed
with any of the following? (List all that apply)
10% Asthma
26% Costochondritis
15% Diabetes
36% Fibromyalgia
37% (Hypo/hyper) thyroidism
36% Irritable bowel syndrome
10% Lupus
10% MS
41% Osteoporosis
05% Other metabolic bones disease
31% Psoriasis
21% Raynauds
36% Rheumatoid Arthritis
36% Sjogrens
10% Colitis
05% Crohn's Disease
05% Celiac Disease
26% Pulmonary Problems
05% Renal Tubular Acidosis
10% Scleroderma
05% Idiopathic Thrombocytopenia
Did either of your parents suffer from any of the above diseases?
Yes 60% No 30% Unknown 10%
Do you suffer from any other Autoimmune Diseases not listed above?
Yes 40% No 60%
Do you suffer from allergies:
05% Sun
20% Chemicals
45% Medications
50% Dust & pollen
15% Animal hair
20% Penicillin
15% Codeine
20% Other
SECTION W Doctors and Research
Where do you get most of your information on PBC? (Multiple answers)
14% Your physician
04% Other healthcare providers
38% Websites on the Internet
90% PBCers support group
14% Other Support group
09% Other such as Infocus newsletter, ALF
How would you rate your physician's level of expertise in dealing with PBC?
05% Outstanding
36% Good
15% Fair
18% Poor
26% Too early to tell
Has your physician provided you with any written information on PBC?
Yes 23% No 77%
Has your physician provided any of the following information? (May be
multiple answers) This includes doctors in alternative medicine.
05% Information regarding stress reduction.
05% Information regarding ways to combat fatigue
05% Information regarding herbal supplements.
10% Information regarding support groups.
05% A referral for counseling.
10% Information regarding exercise.
15% Information regarding vitamins.
10% Information on research being done on PBC.
05% Information regarding transplantation.
55% are comfortable talking to their doctors about all aspects of PBC.
What are the two most frustrating aspects of living with PBC? (Most common)
1. Fatigue
2. Lifestyle & limited activities
What are your MOST important concerns regarding PBC?
1. Longevity of life
2. Concern for family and children
3. Understanding of the fatigue
42% are you aware of the current status of research on PBC
97% would you like to be kept informed of research in the PBC area
What questions would you ask those doing research on PBC if you had the opportunity?
1. What is the cause of fatigue.
2. How familiar is the medical community with PBC
3. Drug trials and how long will Actigall/Urso work to slow the disease progress.
4. How can we help and get involved with finding a cure.
5. Do researchers have any real idea what causes PBC.
100% are willing to help find a cure for PBC and participate in surveys.
97% are will to participate in studies, including those that require blood
sample.
84% are willing to help raise funds for research.
82% are willing to talk to others about PBC.
33% have skills or experience they would like to put to use to help advance
a cure for PBC.
For those who have not yet been transplanted, and recognizing organ viability,
do you feel donor organs should:
09% Stay in the locality in which they were donated.
50% Given to the sickest person regardless of geography.
41% Have not yet decided on this issue.
SECTION X Transplant List
Of those that participated in our survey, 5 are on the transplant list waiting
for one organ, a healthy liver.
The amount of time listed ranges from 6 to 22 months.
This will be the first transplant for each.
SECTION Y Post Transplant
4 post transplant participated in our survey.
How long after diagnosis before going on Transplant list?
1 month to 7+ years
How long were you on the transplant list? 1 week to 4 1/2 years
(The 4 1/2 years may be a misprint)
Was your recovery:
Average 1
Longer than average transplant 0
Major complications 2
Uneventful 1
How long has it been since your transplant? 5 months to 8 years
All have you made a complete recovery from transplant surgery, and PBC
has not returned.
2 still experience some pre transplant symptoms.
2 still experience some memory problems.
1 has another autoimmune disease
THE END..............