I have been to every doctor possible and
they put me on every antihistamine with
no success. My cu appears when I work
out, get stressed or anxious and heated.
I have been to two specialist that didn't
help me at all. They did skin prick
test, ige test, hep b & c, the list
goes on but everything came back negative.
They both said I had cholinergic
urticaria.
I have also tried acupunture, chinese
medicine and this helped a little but not
enough.
About two months ago I came across a
doctor who put me on "cimitidine magicul
800". This helped a great deal but the
cu still appeared in some places. I
recommend you try this. It has a h1 and
h2 blocker, where an antihistamine only
has h1 blocker.
I had been researching my condition
everyday and I come across a drug called
"ketotifen". I only read great reports
about this but it's not available in aust
and no doctor would write a perscription
for me.
Yesterday, I went to another specialist
who perscribes this drug. He said if I
take it for 4mths it should fix the
problem for good. He has about 5 people
a week with urticaria come see him, he has
a very high success rate. I had to
order it from nz and it was $100 for 100
tablets which is a lot cheaper than
antihistamines. This specialist had
urticaria himself so he understands the
frustration that one can have with this
condition. He told me I didn't have
cholinergic urticaria as this only comes
on the stomach and arm area. I get this
all over my body.
I will let everyone know how I go on
"ketotifen". If I have great results I
recommend you all try it.
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pimnation
New User, Becoming EHEALTHy
Joined: 22 Mar 2006 Posts: 3 Location: Waterloo
Posted: 03-22-06 18:42pm
Hey there, I also have cholinergic
urticaria and i've been on zaditen
(ketofen fumurate) for the last few
years.... Its caused streaky results.
Sometimes I am so confident in it I can
just live my life, other days I have sever
reactions 3-4 times a day. I'm heading to
homeopathy in a few weeks to try the
natural method out. Hopefully it works
out... I'll keep you posted.
... Pim brouwers
|
SoFarSoGood
New User, Becoming EHEALTHy
Joined: 21 Aug 2006 Posts: 2 Location: Canada
Please Read If You Are Still Having Trouble... Posted: 08-21-06 21:42pm
Here is my story. There is a happy
ending if you care to read through to the
end.
I was diagnosed with cholinergic urticaria
many years ago. I've had it since I was
a teenager. That was an unpleasant time
because I had no idea what to do about it.
I eventually found that I could keep it
completely under control by getting
regular exercise (twice a week was
enough), as long as I worked up a good
sweat. I mainly used an exercise bike,
but over the years, I have found that a
treadmill is just as good if not better.
That worked well for almost 20 years.
The only time I had symptoms was when I
couldn't, or chose not to, workout for a
couple of weeks or so. It was as though
my body was building up reserves of
histamine while I wasn't working out.
The answer was, as always, to start
exercising again.
About two years ago, for no apparent
reason, the problem got much much worse
very quickly. I started increasing my
workout frequencies to try to keep it
under control, but I was exercising for 45
minutes to an hour every morning.
Eventually, the itching would subside
during my workout, but it would take at
least 20 minutes to happen, and until then
it was like torture. And, less than an
hour later, the itching would resume after
even a short walk to work. It was as
though I had not exercised at all. Very
frustrating. I was really worried about
my ability to continue working. If
you've had bad attacks, you probably know
the feeling. I was tired of the
neverending itching, and becoming very
resentful of the ineffective exercise.
My usual remedy wasn't working anymore.
When I was younger, I had seen a few
dermatologists, and none of them was very
helpful. I had tried several
prescription drugs and the only thing they
accomplished was making me extremely
drowsy. They did not help my condition
one iota.
I was given the name of an immunologist
who, I understand, was highly recommended.
Due to my previous expereinces with
specialists, I was doubtful. He told me
right off the bat that antihistamines tend
to not work very well for c.U. Which I
already knew but was glad to hear from a
professional. I was pleased that he had
another suggestion. The drug is called
cyclomen (also called danazol).
I started taking it right away, and within
two weeks (it takes a while to have an
effect) I could feel a significant
improvement. After about one month, the
symptoms were so much better, I felt like
I was completely back to normal. No
itching at all. I even took a break from
the regular exercising.
My immunologist told me that the worsening
of symptoms had essentially been a flare
up, and that it would go away eventually.
Over time, I was expected to try to
reduce the dosage until I could stop
taking it completely. After several
months, I tried to reduce the dosage, but
felt the problem was returning, so I went
back to the original dosage. A few
months after that, I tried again, and was
able, gradually, to successfully reduce
the dosage down to zero.
Now, I still exercise regularly to keep
the problem in check, and I am back to
normal. For me that means no itching as
long as I exercise once or twice a week.
I remember how bad it was, and I feel for
anyone still struggling with this
problem.
Please get a consultation to see an
immunologist and ask him/her about the use
of cyclomen (danazol) to treat your c.U.
Fortunately, it was covered by my drug
plan. Hopefully it would be covered by
yours as well.
The capsules I was taking are 200mg each.
I can't recall the original dosage, but I
think it was one capsule, three times a
day. I didn't experience any side
effects.
Prior to seeing the immunologist, I did
try a naturopathic approach, and while I
was hopeful, it did nothing for me. If
you are like me, you will need to see for
yourself if the naturopathic approach
works. For me it did not. If it
doesn't work for you either, don't give
up! Get a referral to an experienced
immunologist.
If you want more information about my
situation, please ask. I'm glad to help
if I can. I'll bookmark this page and
check back occasionally. Good luck to
you.