We need more hep C info
I read with interest the interview with Matt Edge about his HIV and hep C
co-infection (Hell for Leather, PN 125). I recently found out I’m also
co-infected after years of living with HIV and thinking I had nothing else
to worry about. It helps to know someone very similar to myself has gone through
the same. It would be helpful if PN could include more information on support
for people like us.
Martyn Wykes, Brighton
New Kaletra muddle
One of our clients recently experienced a problem around the new tablet form
of Kaletra. The old orange, soft-gel capsules, need refrigeration and are
typically dosed at three capsules, twice a day, with food. The new tablet
does not need to be refrigerated, and the typical dose is two tablets a day;
there is no need to take it with food and it has fewer gastro-intestinal upsets.
Our client was on the old Kaletra for many years but is doing well on his
current Kaletra-containing regimen. His consultant recently switched him to
the new form but when he got home he found the pharmacy had given him the
old Kaletra capsules marked up with instructions as if they were the new tablets.
He realised there was a problem but the pharmacy assured him everything was
as it should be. Our client knew this was not the case so he is taking the
old Kaletra in the old way, and has taken the matter up with his consultant.
This incident concerned me as others may have accepted the pharmacy's word
and, as a result, may have taken a sub-optimal dose of Kaletra and stored
them inappropriately. This could lead to someone taking sub-therapeutic levels
of Kaletra for
a prolonged time and could give rise to an increase in viral load and possibly
even resistance. It’s worth ensuring that people on Kaletra know the
difference between the old and new form are aware of the changes and the dosages.
North Yorkshire Aids Action
Rights and responsibilities
I read with some incredulity, and then anger, last month’s letter (Responsible
Adults) that said the government was shifting personal responsibility from
one adult to another just because they have HIV. They are not. What society
is quite rightly asking is that if you have a potentially dangerous and costly
disease you need to take measures to ensure you don’t infect others.
This is common decency and not to do so indicates a total lack of respect
for your partner. The recent case of the gay man jailed for transmission was
all about honesty: he repeatedly lied to his partner, friends and medics about
his status and infected his partner in full knowledge of his deceit. Many
of us with HIV are aware of its health and financial costs. I have rights,
but for every right there is an equal responsibility. If you, like me, are
HIV positive, it is beholden upon you to prevent transmission, otherwise you
are guilty of inflicting pain
and suffering upon another, and deserve sanctions. Rights, responsibilities
and respect; are they so hard to understand?
Jonathan Carlson, London E15
Bone-fide misdiagnosis
I have been positive for three years and am not on meds. I would just like
to alert you to a little known problem in our ranks.
Ten months ago I had serious shoulder pain and was diagnosed with frozen shoulder.
Seven months on, it still hurt terribly, so being a nosey female, I resorted
to the internet. It turned out it was avascular necrosis (AVN), or osteonecrosis,
a bone disease starting to emerge as a growing problem in people living with
HIV. AVN is bone cell death from a diminished blood flow to the bone. It’s
rare in the UK but not in America where around 31 per cent of HIV positive
people develop it. So if you have you have a serious pain in the butt, shoulder
or anywhere else, it could be AVN. It normally starts in your hip and is commonly
misdiagnosed as joint pain.
Name and address supplied
Don’t put up with GP gyp
I was saddened to read of Mark Thompson’s experiences at his GP (Letters,
PN125). But it’s important to emphasise that if positive people use
GPs for non-HIV issues, it will help take pressure off HIV clinics. I’d
urge everybody who is HIV positive to make sure their doctor writes to their
GP after each
consultation. Don’t put up with a poor service or ignorance from your
GP: complain, see a different one, or even move practice.
Michael Carter, London
Bum deal
The story Get Your Bum Checked Regularly in Healthy Living News (PN 125) paints
a misleading picture. In my experience, it’s impossible to access routine
yearly anal pap smears at either GUM or HIV clinics despite having been diagnosed
with high-grade AIN (anal intraepithelial neoplasia) about six years ago.
This seems to be due to a lack of expertise amongst clinicians and general
apathy on the part of the NHS. The follow-up tests have now been withdrawn
and I await the outcome of a complaint. I'd be interested to learn of clinics
where these tests are routinely available.
Anal pap smears are not as straightforward as cervical smears and much remains
to be learned about the links between anal cancer and HPV. But sadly, most
men who develop high-grade AIN and then go on to develop cancer will only
discover what is happening late in the process, when more radical and possibly
less successful treatment options are available. This will not change unless
HIV positive gay men and their supporters make a lot of noise about it.
Name and address supplied.
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