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Ben J. (from Oregon) - asymptomatic
Birthdate: ? |
| Medications: Penicillamine,
Zinc Acetate (Galzin)
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| How My Wilson's Disease was Discovered | |
| In 1978 my brother and I were screened due to the diagnosis
of a cousin's WD. I was five at the time. My brother is also a WD patient,
as are 3 cousins. The tests which led to my diagnosis included blood and
urine work, and were confirmed by a needle liver biopsy--ouch! Upon diagnosis
I was immediately started on Penicillamine at 1 g/day. I continued Penicillamine
treatment for almost 20 years, until I switched to zinc acetate in October
of 1997. I am presently under the care of Dr. Robert Steiner of Oregon
Health Sciences University Metabolic Clinic.
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| My Symptoms Before Treatment | |
| I was very fortunate to have been diagnosed pre-symptomatic
at such a young age.
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| My Symptoms Now | |
| I continue to be pre/a-symptomatic. It is my intention to
stay that way! I was also very fortunate to not have suffered any significant
side-effects from the Penicillime treatment. I decided to switch to zinc
because I perceived there being a risk of side-effects developing after
decades of continued use of Penicillamine. I was told by more than one
doctor, that if I had not already had side-effects that it was extremely
unlikely that they would develop. However, when you look at the list of
side-effects of penicillamine and compare it to that of zinc (see
WD Association web page), it is hard to imagine that decades of taking
that stuff won't do something to you. Some of the side-effects of penicillamine
appear to be very difficult to qualify in some patients--especially neurologic/phsychiatric
side-effects. I was not going to take any chances when there was an effective
alternative such as zinc with only mild side-effects. Experts in the field
now recommend zinc for maintenance therapy.
In all fairness, zinc can have minor side-effects. I frequently suffer from mild to moderate nausea if I take zinc on a very empty stomach. Only twice have I vomited shortly after taking zinc. In spite of the nausea side-effect, I do not regret switching. A little nausea is nothing compared to some of the side effects of Penicillamine for some people. A word of caution: my experience is that many doctors are hesitant to
put/switch patients to zinc--the "new" treatment (zinc has actually been
used for decades). New things take energy, and some doctors don't have
the energy/time to spare on "new" or what they perceive to be "experimental"
treatments. If your doctor won't take a serious look at zinc for maintenance
or pre-symptomatic therapy, get a second opinion.
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| Additional Comments | |
| In spite of my WD, I have lived a normal life. I am very
lucky to have been diagnosed so early in life. WD is almost a non-issue
for me, except for periodic check-ups and 3 times daily medication. The
only struggle I have is taking my meds on time.
I am presently a graduate student in hydrology at Oregon State University,
Dept. of Bioresource Engineering. In my spare time I enjoy white-water
kayaking, rowing, skiing, brewing and spending time with family and friends.
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| Contact Info | |
| Ben Jacob
Hablo espanol!
web site: http://www.engr.orst.edu/~jacob |