G'day
I haven't submitted for a while but life's been a bit hectic and there just
never seems to be enough time to fit everything in. It's good to see many of
the old favourites, Dave, Julie & G., still ploughing ahead.
The reason I really wrote is to get some advice regards a rash which
developed which the Doc/s are sure is related to a reaction to medication
and more specifically to anti-convulsants. At the time it started I was
taking 1000 mg tegretol (carbamazepine) b.d. and 200mg lamictal
(lamotrigine) b.d.
My G.P. thought I may have TEN (toxic epidermal necrolysis) a particularly
dangerous skin rash which can be fatal in thirty percent of cases. I
reminded him of the fact that lamictal could cause this though usually only
in the first few weeks of commencement of taking it should you be allergic
to it. We then looked on the internet and two of the top medications which
can cause TEN are tegretol and of course lamictal. His advice was to
immediately discontinue one of the drugs and start using something else.
Between us we decided to substitute lamictal with keppra (leviteracetam).
Gradually (5 weeks) the ulcers healed and the rash faded.
Unfortunately the rash came back though not quite as severe and after
consultation with a dermatological specialist I was given a cortisone
ointment which has largely caused the rash to fade though not entirely.
I know there is/can be a reaction between tegretol and lamictal when they're
metabolised in the body (liver) and I'm sure that one of the contributors to
the group had a reaction regarding these two medications several years ago.
One plus out this whole mess, is that since I've started taking keppra, I've
not had any problems epilepsy wise, not even an aura and no significant side
effects. If anyone has any thoughts or suggestions I would appreciate them.
Pablo
G. - 30 Sep 2006 02:58 GMT
> G'day
> I haven't submitted for a while but life's been a bit hectic and there just
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> effects. If anyone has any thoughts or suggestions I would appreciate them.
> Pablo
Hi, I thought you had been kidnapped... :-< At max. I was only at
2x400mg Tegretol CR, but seem to also recall an advisory on my
Drugstore printout about 'advise the Doctor' if I got a rash while
using Tegretol. (I now use only 1x400mg with another pill /Frisium.)
I've never had it, but there were 1 or 2 people back then (1998?) who
weren't able to use Tegretol because of reactions they had.
I don't recall if there is specific information on Tegretol and
reactions on the U.S. Ep. Foundation Glossary or not. http://efa.org
I think you type in the pill or scroll down to the link in alpha order,
to see. Or you pharmacist might have a www address specific to
Carbamazepine (Tegretol). They have the scripts etc. so often have
more up to date information on pills than some Doctors might have time
to read. Hope that helps. G./
Julie - 30 Sep 2006 05:06 GMT
> G'day
> I haven't submitted for a while but life's been a bit hectic and there just
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>
> Pablo
Hi Pablo, good to see you are still around. Sorry to hear about the
bad reaction, but it sounds like you are getting a handle on it. I'm
taking keppra now and weening myself off phenobarbital. So far so
good. I'm decreasing the phenobarbital every six weeks now. I think I
have about 9 months to go before I have reduced it to zero. I have
withdrawal symptoms that last about a week, but it is not as bad now
that I am waiting longer before the next reduction and reducing a
smaller dose.
Take care,
Julie
Pablo - 30 Sep 2006 06:22 GMT
G'day Julie,
it's only been 8 or 9 weeks since started taking Keppra but if it keeps
going the way it has it'll get my vote. The worst I've had from it so far is
a little light-headedness,which is fading, and I'm finding it harder to read
small print, which I also got when I started to take tegretol 5 years ago
and if it follows the same pattern that will also improve over the coming
months.
You certainly do seem to have a long change over period but gee what's time
matter as long as there is a benefit. When the Dr. got me to change off
lamictal this last time it was an overnight switch for obvious reasons but
despite my concerns about rebound seizures all has been well. I was thinking
about whether it would be prudent to maybe change off tegretol to something
like trileptal but considering I have enjoyed total control so far "if ain't
broke don't try to fix it." All the best with your continuing progress,
Pablo
>> G'day
>> I haven't submitted for a while but life's been a bit hectic and there
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> Take care,
> Julie
Liz MacDonald - 30 Sep 2006 14:22 GMT
Hi Pablo,
I'm one who had a reaction to Tegretol. Long time ago, and it was the
very first med I tried, but the rash developed soon after starting it.
Years later, swollen lymph nodes were my reaction to Lamictal.
Hope the keppra works for you!
Liz
> G'day
> I haven't submitted for a while but life's been a bit hectic and there just
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>
> Pablo
Pablo - 30 Sep 2006 16:33 GMT
G'day Liz,
The strange thing has been that I've been taking both medications for 5
years or more. But who knows? the body is forever changing.
Pablo
> Hi Pablo,
> I'm one who had a reaction to Tegretol. Long time ago, and it was the
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>>
>> Pablo
howdydave - 30 Sep 2006 21:54 GMT
Howdy Pablo!
Since skin rashes have been known to be fatal,
I would suggest contacting the
POISON CONTROL CENTER
(if they have such a thing in Oz.)
If you live in the city you might even
want to consider (I shudder to even say it)
The Emergency Center.
In any event...
WE ARE NOT DOCTORS.
I would suggest that you keep on the
doctor's cases. If you can't get a satisfactory
answer from the doctor you are seeing, ask for
a referral to another one -- and another
and ANOTHER!
I'd rather be a pest that run the possibility of
ending up dead due to one doctor's ignorance.
Dave
> G'day Liz,
> The strange thing has been that I've been taking both medications for 5
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> >>
> >> Pablo
Pablo - 01 Oct 2006 00:25 GMT
G'day Dave,
Nice to hear from you again. You're definitely right in the fact that we're
not Docs. But my G.P. has always had a lot of respect for the knowledge that
I have gained regarding epilepsy and the medicines used to treat it and more
than half of that knowledge can be traced back to this newsgroup and the
experiences of the people who post here.
Worry not about me giving up on the medical profession as I will be going
through another battery of tests this coming week including a little bit of
minor surgery but every little bit helps and anything that I may pick up
here in the way of someone's experiences in this matter just may be helpful
in some small way to the medicos.
Pablo
p.s we do have a Poisons Information Centre in OZ and it can be contacted
from within oz by ringing 131126. I think it's the cost of a local call
which at this time isn't timed in Australia
> Howdy Pablo!
>
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>
> Dave