Heres my story, its pretty similiar to
everyone elses, apart from two distinct
areas
Whenever i get hot quickly, or my heart
rate increases, i get lots of tiny red
dots (not usually raised) all over my
body, especially arms! It has been
happening since around december this year.
But this is where my first difference
comes in, i do get the initial tingling,
but when the hives come, they dont itch!
Will this come in time i wonder (only been
noticing it since March)?
And my second difference is.... I see that
alot of people on here complain that they
dont sweat at all but I have something
called hyperhidrosis, which means that i
sweat extreme amounts for no reason! Like
just sitting down watching TV i will get
large sweat patches! So to prevent this is
put on something called perspireX which
makes my sweating less, but still more
than the the average person!
Ive started taking loratadine once a day,
which has made it a bit better,.. Yet i
still get the spotty hives every other
day. I have an appointment with my GP on
wednesday and im not getting my hopes up
as i imagine i need to go to a skin
specialist!
This condition is absolutely horrible! I
havent excercised in like the past month
and i had sex for the first time since ive
had CU last weekend, and i got hives all
overr my chest and stomach... We did get
on really well but havent spoken since the
sex which i imagine is because of my hives
( Destroying my self confidence! )
........ or it could be because i was bad
in bed. ha.
I would rather that to be honest!
Goood luck!
|
yankeesfan01
New User, Becoming EHEALTHy
Joined: 06 May 2008 Posts: 2
Posted: 05-06-08 23:08pm
So i've had this since about last
November, seemingly ever since I stopped
exercising due to an increased amount of
studying=less time at college. Haven't
really tried much except Zyrtec, which
helped reduced the severity of my attacks
a bit. This has been quite frustrating
for me, as I enjoyed an active lifestlye.
I recently went backpacking and quickly
broke out not long into the hike. I'm
determined to get through this though...so
I'm going to try and force myself to sweat
by biking daily. I'll let you know how it
goes. Hopefully this will help me build a
tolerance so I can get back to a normal
life. Thanks for all the encouragement
here, its good to know I'm not alone in
this. Good luck to all.
|
anatta
New User, Becoming EHEALTHy
Joined: 13 Nov 2007 Posts: 6
Re: re: anatta Posted: 05-09-08 20:36pm
Jon Law,
That is certainly a helpful bit of
information. Thanks for the post!
-B
Jon Law
wrote:
Hey Anatta,
I think if you read back along through
some of the posts, you'll see that a
number of people have tried exercising and
purposefully bringing on the hives with
hot showers as a means of depleting
histamine stores (myself included).
You're correct about the histamines etc.
hence all the anti-histamines that a lot
of us have tried. But there's another step
before the release of histamine which can
be tackled. Histamine is released from
mast cells when IgE's bind to the mast
cells. I put up a link to a paper a few
posts back where some doctors showed that
if you get rid of the high levels of IgE
(which their patient exhibited and which
they believe most CU sufferers may have),
then you don't have to worry about dealing
with the excessive amount of histamine.
It's more effective and less painful!!
They used a drug called Omalizumab
(marketed as XOLAIR) which is injected
every 2-4 weeks. This binds to the IgE
which prevents the IgE from binding to the
mast cells, which prevents the release of
histamine. They have successfully
demonstrated this treatment and a patient
who had CU for 5 years is now attack free
for the last 22 weeks. This includes
provocation from hot baths and exercise.
I've had blood tests taken last week and
sent away to measure IgE levels. I will
have them back next week and will let you
know whether they are abnormally high or
not.
The problem with XOLAIR is it is very
expensive if not covered by insurance. It
is traditionally used to treat allergic
asthmatics.
|
Jon Law
New User, Becoming EHEALTHy
Joined: 24 Nov 2007 Posts: 28
IgE levels Posted: 05-13-08 05:58am
As expected, my IgE levels were very high.
The reference is 87 IU/ml and my results
came back around 152 IU/ml with anything
over 100 IU/ml seen as elevated. Next step
is to find a doctor who may prescribe the
Xolair.
IgE is typically high in peoples blood
levels due to some type of allergy so
perhaps some people may have some success
with allergy testing etc. I'm not sure.
Best of luck everyone anyway.
Okay folks,
Immunologists are the people we should be
seeing. Not neurologists,
endocrinologists, dermatologists etc.
Hopefully others won't have to go through
the same process of elimination like I
did.
|
Duper
New User, Becoming EHEALTHy
Joined: 18 Jun 2006 Posts: 33 Location: New york
Posted: 05-14-08 19:24pm
Thanks for the updates, Jon. Good luck and
make sure to tell us how things turn out.
|
Jon Law
New User, Becoming EHEALTHy
Joined: 24 Nov 2007 Posts: 28
re: Duper Posted: 05-15-08 05:32am
I'm waiting on a appointment to see the
immunologist at the moment. The doctor who
referred me to him was also really
knowledgeable about the condition and all
the drugs involved. He said though that he
wouldn't have the expertise to prescribe
Xolair so that's why I'm being referred to
the immunologist.
The doctor did prescribe another drug in
the meantime which I wasn't on before
called singulair. I think it's also
normally used for asthmatics but it is
known as a mast cell stabiliser. I have
only taken it for one day so far so I
can't comment on it's effectiveness but
maybe it would work well for some other
people out there. It's a different
approach than the anti-histamine approach
(which I don't like in the first place
because it's not really addressing the
problem).
Best of luck anyway guys.
|
Akoni
New User, Becoming EHEALTHy
Joined: 05 Dec 2007 Posts: 2
Posted: 05-18-08 18:45pm
Hey Jon, thanks for bringing this to my
attention. This Xolair seems promising.
I've looked around for some more info on
it but im only getting old data. Do you
think you can find out on your next visit
whether one would have to take Xolair
every 2-4 weeks for the rest of ones life
or whether one would take it for a
treatment period (say a few months) and
have it clear up and be done with it?
Thanks much for your info so far.
|
nds88
New User, Becoming EHEALTHy
Joined: 22 Apr 2007 Posts: 20
Posted: 05-19-08 00:39am
Akoni
wrote:
Hey Jon, thanks for bringing
this to my attention. This Xolair seems
promising. I've looked around for some
more info on it but im only getting old
data. Do you think you can find out on
your next visit whether one would have to
take Xolair every 2-4 weeks for the rest
of ones life or whether one would take it
for a treatment period (say a few months)
and have it clear up and be done with it?
Thanks much for your info so
far.
I doubt they will ever find a cure. The
reason being money. Why would someone
design a drug that needs to be taken for a
period of time (say a few months) then
have them completly cured of CU, when they
can design a drug that you must take every
2-4 weeks for the rest of your life to
relive the symptoms. It makes more
economic sense to have a customer for life
rather than a customer for a few months.
On a side note, it finally got hot in my
city. Friday was the first hot day of the
year and I spent it outside mowing the
lawn. I got some tingles, not too bad, for
about 15 minutes then it went away after I
broke out into a sweat. Yesterday
(saturday) was even hotter and I spent
most of the day outside doing some
work...just had like a minute of
itichiness in the morning. Today was
GREAT, no breakouts or CU symptoms at
all!!! Even though its hot and I'm not
sweating all day, my body temperature is
higher than usual. So after the first hot
day I sweat out all the histamines. Since
my body is hot throughout the whole day it
is constanly sending signals to release
histamines, but my histamine reserve is
now depleated and my body is releasing
only small amounts of histamines through
out the day that are not enough to cause
an outbreak or itching, but it is also not
allowing the histamine reserve to build up
and save it for an outbreak.
This is why I love summer...I only wish I
lived in a city that was hot year round.
Where is everyone else from and are they
experience the relief of summer as I am?
|
GJG
New User, Becoming EHEALTHy
Joined: 04 Jan 2008 Posts: 11
Posted: 05-19-08 01:42am
It is completely the opposite for me.
Summer is the worst time for me because I
even break out in my sleep. I live in Los
Angeles and it's been very hot over here.
I exercise every morning but i get no sign
of relief because i cant break a sweat for
some reason, I just get very red. I do 4
sets of 45 push-ups and i run a mile every
day in the park. The only good news from
my exercise is that I'm getting back into
shape.. I don't mind waking up at 6:00
a.m. every day to work out but i just hate
the thought of breaking out during my
exercise. I'm not going to stop this
routine until i get some kind of relief.
I also changed my sleeping routine. I use
to go to sleep around 1:00 a.m. and 2:00
a.m. because i get a lot of homework for
home studies and college classes. For
about a month now, i usually go to sleep
around 9:00 p.m. and 10:00 p.m. on
weekdays and 11:00 p.m. on weekends.
Hopefully this will make some kind of
difference.
The funny thing is that I've been going to
acupuncture twice a week for about 4 weeks
now. They also gave me this brownish
horrible tea to drink 3 times a day.. I
guess it helps a little but it's just not
enough, at least for me. I was thinking
about Xolair but it's pretty expensive.
Well, I'm going to keep this routine up
and see what happens.
Best of Luck..
|
Jon Law
New User, Becoming EHEALTHy
Joined: 24 Nov 2007 Posts: 28
re: akoni Posted: 05-19-08 05:38am
Akoni
wrote:
Hey Jon, thanks for bringing
this to my attention. This Xolair seems
promising. I've looked around for some
more info on it but im only getting old
data. Do you think you can find out on
your next visit whether one would have to
take Xolair every 2-4 weeks for the rest
of ones life or whether one would take it
for a treatment period (say a few months)
and have it clear up and be done with it?
Thanks much for your info so
far.
I'm not sure akoni. I do think though that
CU may only effect younger men so maybe
it'll naturally go on it's own someday and
you won't need the drugs anymore. I was
wondering the same about it myself but
because it's used for allergic astmatics
and there hasn't been much published on CU
sufferers using it, I haven't seen that
information. I know in the paper that I've
read, the dosage was reduced after a
number of weeks from the initial amount.
Xolair is ridiculously expensive though
and I don't think anyone could afford it
if it wasn't covered by insurance. I don't
know if this is the answer though. It's
just something to ask an immunologist
about (GPs may not be comfortable
prescribing it).
|
nds88
New User, Becoming EHEALTHy
Joined: 22 Apr 2007 Posts: 20
Posted: 05-19-08 12:25pm
GJG
wrote:
It is completely the
opposite for me. Summer is the worst time
for me because I even break out in my
sleep. I live in Los Angeles and it's been
very hot over here. I exercise every
morning but i get no sign of relief
because i cant break a sweat for some
reason, I just get very red. I do 4 sets
of 45 push-ups and i run a mile every day
in the park. The only good news from my
exercise is that I'm getting back into
shape.. I don't mind waking up at 6:00
a.m. every day to work out but i just hate
the thought of breaking out during my
exercise. I'm not going to stop this
routine until i get some kind of relief.
I also changed my sleeping routine. I use
to go to sleep around 1:00 a.m. and 2:00
a.m. because i get a lot of homework for
home studies and college classes. For
about a month now, i usually go to sleep
around 9:00 p.m. and 10:00 p.m. on
weekdays and 11:00 p.m. on weekends.
Hopefully this will make some kind of
difference.
The funny thing is that I've been going to
acupuncture twice a week for about 4 weeks
now. They also gave me this brownish
horrible tea to drink 3 times a day.. I
guess it helps a little but it's just not
enough, at least for me. I was thinking
about Xolair but it's pretty expensive.
Well, I'm going to keep this routine up
and see what happens.
Best of Luck..
How long have you had CU? How long have
you been doing this exercise routine?
When I first learned of the sweat method
it took about 3 trys before I could break
into a sweat. This was becuase I would
break out in a horrible itch and not be
able to continue through with the
exercise. The fourth time I was able to
bear through the itch and after about 10
minutes it was gone and I was sweating.
Everytime got easier and easier. I think
the trick is to bear through the itching.
If you exercise to heat up, break out,
then quit- you probably won't get any
relief even if you did this everyday for a
year. You must bear through it so your
histamine reserve will be depleted.
It takes anywhere from 5-15 minutes of
itching for me when I use the sweat
method, but I guess depending on the
person may take more or less time. I think
running a mile in not enough because a
mile is ran in about 7-8 mins. I do 10-12
laps (2.5-3 miles) and take about 30
minutes to do this. Try listening to music
when you run as well, it helps distract
you. I know its tough but try to bear
through it.
|
qtmed
New User, Becoming EHEALTHy
Joined: 17 May 2008 Posts: 5
Try this for hives!! Posted: 05-20-08 01:02am
I just posted my similar condition a few
days ago. I have the same thing, but along
with the rash..if I dont "chill out" it
turns into an allergic reaction. It
started the same as your condition, but
over a 10 year span, I seem to be getting
more sensative to it. I've seen so many
Dr's and tried sooo many medicines. The
only one that seems to make me less
sensative is Allegra 180 twice a day. Its
generic name..Fexofenadine. Hydroxazine
works a little..but youre right, the side
effects plus the histamine is unbearable.
Good luck and let me know what you find!!
qtmed
|
qtmed
New User, Becoming EHEALTHy
Joined: 17 May 2008 Posts: 5
Nice 2 c some ppl who understand!! Posted: 05-20-08 01:19am
I have had this condition for over 10
years and it progressivley gets worse. It
starts as a heat rash over my
neck,arms,trunk, and upper thighs. I can
get this while sitting,standing, walking
short distances,
heat,humidity,cold,pressure,being excited,
nervous, or stress. It is not brought on
by any type of food. I do not have asthma
symptoms. If I begin to notice the rash, I
must sit down or remove myself from the
environment causing it. If I can not, I
begin to get hives in the same areas as
the rash. My eyes, lips, ears, and throat
begin to swell. Recently, after the birth
of my son (by C-section), I have been
getting severe cramps in my lower abdomen
after the swelling has gone down on my
face and throat. It is so severe I cannot
stand, or sit. I get nausiated from the
pain. I can only describe it as a very
strong pressure. It feels like my insides
are about to come out..to put it bluntly.
Currently, I am on Allegra 180 bid,
Singular, epi-pen as needed, hydroxadine
to take as the symptoms occur. I am 27 and
have gained over 100lbs over the years
because my activity is limited. I need
some answers so I can live a normal
life..Please HELP.
.....Ive found that the Allegra
180(Fexofenadine) has dramitically
improved my sensativity.
|
GJG
New User, Becoming EHEALTHy
Joined: 04 Jan 2008 Posts: 11
re:nds88 Posted: 05-20-08 02:22am
I've been suffering from CU for about 2
yrs 6 months now. I started my exersise
routine about 3 weeks ago but no luck yet.
I'm going to try running 2 miles now to
see if I break a sweat. If that doesn't
work, I'm just going to keep running until
I faint I guess lol.. Listening to music
while running helps because it makes me
forget about the pain. I just start
listnening to A7X and it gets me pumped
lol..
I've been drinking nothing but water and
cranberry juice for about 2 months now. I
don't eat meat either, just fish and rice
lol. I don't eat fruits though, just
vegetables. I drink at least 6 Fiji water
bottles everyday. I noticed that my face
has been clearing up ever since i started
this routine. I'm not saying I like it
this routine but, it does help a lot trust
me.. It's been a big sacrafice for me
because I love sugary foods and junk food
and stuff like that lol, but I rather make
this sacrafice then live with CU.
|
qtmed
New User, Becoming EHEALTHy
Joined: 17 May 2008 Posts: 5
Curious!! Posted: 05-20-08 17:07pm
Has anyone else had an elevated Serontonin
level in addition or cause of their CU??
I've had every other test done that
eliminated my high levels. I've read that
Serontonin levels can go if you have
damage to blood vessels. Im guessing that
CU might have played a role in this. Im
curious to see if anyone else has seen a
change in other hormones or levels in
their blood results?
|
GJG
New User, Becoming EHEALTHy
Joined: 04 Jan 2008 Posts: 11
1 month of exercise.. Posted: 06-01-08 17:47pm
Just letting everybody know that my
exercise routine worked. I started
sweating just yesterday and my hives
disappeared for the entire day. I was
really happy when my annoying hives went
away. I knew that it was only going to be
gone for 1 day so what i did was workout
and sweat in the morning and in the night.
I woke up this morning to go exercise and
once i started running, i didn't get any
itch or pain or any sign of hives..
I think i didn't get the hives anymore
because i also started exercising and
sweating in the night. I'm not planning to
stop this routine any time soon. I just
won't dare stop exercising lol. It feels
so good going outside once again in the
hot sun. I'm telling you guys, this
routine was totally worth the sacrifice.
I'm not going to lie, it wasn't easy at
all but i managed to do it the hard way.
Doing it the hard way (exercising) is the
only way you are going to get guaranteed
results, even if it takes a month or more
but in the end, you'll be really, Really,
REALLY happy and relieved, just like I am
today. Good Luck..
|
Duper
New User, Becoming EHEALTHy
Joined: 18 Jun 2006 Posts: 33 Location: New york
Posted: 06-01-08 23:56pm
Good to hear GJG. I'll be signing up for a
gym tomorrow, wish all you guys luck.
BTW, taking a vitamin B (or vitamin B
complex) supplement is a HUGE help when it
comes to sweating in my experience.
Definitely recommended.
|
Jon Law
New User, Becoming EHEALTHy
Joined: 24 Nov 2007 Posts: 28
re:CJG Posted: 06-02-08 06:52am
Happy for you CJG. Sounds like you're
allergic to being unfit!!!! That's one to
brag about!!
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