I tried to warn people about this drug. I though the advocates were just pushing to get anything out there. They did not care about the side effects. I felt bad blogging against it. Now I know that I was right. Do you research before you put anything in your body.
My step-relative (a recent widow who lives alone) was prescribed half
a tablet twice a day (25g total) Tetrabenazine by a neurologist in
October 2007. Her dose was increased at the annual visit to the
neurologist in Oct 08 to 37.5g and a month later to 50g daily. We
were at no point given any written information about the drug and
were reassured that the only side effects were "rigidity" and that
she would only be taking half the "maximum dose", so would be fine.
Not having had any previous experience with HD my husband and I
assumed that any symptoms displayed by our relative were caused by
HD. However, by December I was very concerned that my relative had
become very sleepy and tired, lost her appetite, "couldn't be
bothered" to prepare and eat even simple food, lost 3 kg in a month
(having dropped from 65 kg to 56 kg since Oct 07), felt more restless
(akathisia), obsessively anxious, and so on.
So, I did what I wish I had done in October 2007 and googled the
internet for information on TBZ. This was most helpful:
http://www.xenazineusa.com/files/PI.pdf. I was shocked to read for
the first time of the potential side effects and warnings to report
various symptoms to the patient's doctor. I decided that, since
Christmas and the school holidays were coming up and I wouldn't be
able to keep an eye on my relative so easily, I would drop her down
half a tablet and take her to her doctor in the New Year.
Fortunately, tetrabenazine doesn't build up in the body, so within 24
hours she was feeling much better, i.e. less sleepy and more hungry.
I was really cross that I had been left to work this out for myself
and not warned to look out for changes as the dose increased.
Fortunately, I am able to interpret much of the medical language in
the TBZ information due to studying psychology in the past. My
understanding is that the maximum dose for MOST patients is 50mg, but
SOME people may need up to 100mg if they have a "metabolic genotype"
which means they don't absorb it as well. To be given more than 50mg
the patient must have a bloodtest to see if they have this genotype.
Judging by my relative's severe reaction to 50mg, she does NOT have
this genotype, so the neurologist's argument that she would be fine
on 50mg because she could take up to 100mg is a load of old cobblers.
We are going to discuss the drug with my relative's doctor (although
he did not prescribe it) and ask whether she should reduce the dose
further to see whether some of her continuing symptoms are in fact
side effects of TBZ, but this would mean her chorea will worsen
again. A dilemma.
My step-relative (a recent widow who lives alone) was prescribed half
a tablet twice a day (25g total) Tetrabenazine by a neurologist in
October 2007. Her dose was increased at the annual visit to the
neurologist in Oct 08 to 37.5g and a month later to 50g daily. We
were at no point given any written information about the drug and
were reassured that the only side effects were "rigidity" and that
she would only be taking half the "maximum dose", so would be fine.
Not having had any previous experience with HD my husband and I
assumed that any symptoms displayed by our relative were caused by
HD. However, by December I was very concerned that my relative had
become very sleepy and tired, lost her appetite, "couldn't be
bothered" to prepare and eat even simple food, lost 3 kg in a month
(having dropped from 65 kg to 56 kg since Oct 07), felt more restless
(akathisia), obsessively anxious, and so on.
So, I did what I wish I had done in October 2007 and googled the
internet for information on TBZ. This was most helpful:
http://www.xenazineusa.com/files/PI.pdf. I was shocked to read for
the first time of the potential side effects and warnings to report
various symptoms to the patient's doctor. I decided that, since
Christmas and the school holidays were coming up and I wouldn't be
able to keep an eye on my relative so easily, I would drop her down
half a tablet and take her to her doctor in the New Year.
Fortunately, tetrabenazine doesn't build up in the body, so within 24
hours she was feeling much better, i.e. less sleepy and more hungry.
I was really cross that I had been left to work this out for myself
and not warned to look out for changes as the dose increased.
Fortunately, I am able to interpret much of the medical language in
the TBZ information due to studying psychology in the past. My
understanding is that the maximum dose for MOST patients is 50mg, but
SOME people may need up to 100mg if they have a "metabolic genotype"
which means they don't absorb it as well. To be given more than 50mg
the patient must have a bloodtest to see if they have this genotype.
Judging by my relative's severe reaction to 50mg, she does NOT have
this genotype, so the neurologist's argument that she would be fine
on 50mg because she could take up to 100mg is a load of old cobblers.
We are going to discuss the drug with my relative's doctor (although
he did not prescribe it) and ask whether she should reduce the dose
further to see whether some of her continuing symptoms are in fact
side effects of TBZ, but this would mean her chorea will worsen
again. A dilemma.
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