Re: Newbie to site [sorry,very long]

[Guest guest]

Welcome, and sorry you had to find us, as we always say around here.

I do have something to blame for mine, cold. But as you may have

noticed I had a reaction possibly to the sun today, so often when you

get this mess I've noticed that sometimes it can be multiple

triggers...hard to pin down.

I'm on Periactin too. I take 4mg 3 times a day, sometimes 4. It did

make me so tired for the first week, but once I got through that I

was able to sort of get used to it. I have to take Zantac for my

stomach and stick to a low histamine diet. I am about to try adding

Singulair but I'm not sure I have much hope for it since most people

here have said it didn't really help.

There are plenty of knowledgable people around here, that can tell

you want to test for etc etc. They keep up on the newest meds and

stuff too. Then there are those who are just supportive. And then

there is me, I'm pretty useless but they let me stay. Haha.

Stick around and maybe we can help you pin down some triggers or at

least some relief. This thing causes different reactions in different

people so sometimes it's kind of hard to figure out and deal with. In

any case, were are here, just for venting if you need to.

Welcome again,

Alia

> Just wanted to say hello and how relieved I am to have finally

found

> you all! I will try to make my introduction as brief as possible,

but

> going to be hard as I have been battling these hives for years and

> been thru a lot as all of you, I also have " tons " of questions.. LOL

>

> I remember having hives all thru my childhood off and on, but they

> always seemed to go away or had reason to be there, but in

> summer of 00, they came to stay!! I had alot going on in my life

and

> passed them off as stress, so I suffered for almost a year before

> going to dr to get help or " jump off a cliff " LOL Dr. put me on

> Prednisone and this seemed to help, but then when time to taper,

came

> back full force again, then went to Z/Z treatment only 1xday no

help,

> so back on Pred for another few months w/same results, so he

referred

> me to Dermatologist, he gave me the low down on CU and blood

workup,

> xrays [all neg] started me on Periactin 4mg 2x day, and Doxepin

25mg

> bedtime along w/Pred 25 mg 3xday, The Pred worked, but the other

> zonked me that I literally fell asleep at work!! Then we tried

> Atarax/Zantac w/no results, This time when it came time to taper

the

> Pred, I got really sick and felt " flu like " skin burning,the head

> itching started again,and also got angioedema I couldnt funtion, he

> would " up " it again

>

> In Oct 01 after months of this and tired/frustrated/itchy and even

> more stressed, I decided to go see an Immunologist/Allergist, and I

> finally got answers.After discussing my symptoms/no changes in

> diet/detergents etc... he decided to do a blood serum test, to rule

> out " being allergic to myself " well, my test came out positive and

> was diagnosed as having " Autoimmune Chronic Uticaria " I was

> devestated to say the least, and not even sure what this is. I

> dont have anything to blame...food/solar/cold/heat/etc., none of

> this causes me to break out...its just always there! Dr sent me

for

> more blood work/xrays/urine, he wanted to rule out Lupus due to

> my symptoms, all came back fine.

>

> I have been on 180mg Allegra 3xday, and Zantac 150mg 2xday and

> was suppose to taper off as I felt I could, I did get to 1x day for

> about a month, now for 2 weeks I have been " feeling " them, and

> tired/achey/skin burning again and just a few get to pop out.

>

> So there is my story, sorry not so short, but hard to do and get

most

> of it out.I just dont know where to go from here, what to do, or

how

> this can be happening when I have been told that nothing I am

> doing/ingesting is causing this?? Has anyone every heard/had this

> Autoimmune CU, or is it the same as the others ??

>

> Thanks for being here, at least I can vent and not always complain

to

> hubby who has been so great but just doesnt fully understand what I

> have been going thru.

>

> Hugs and Prayers for you all to be hiveless!!

> Y

[Guest guest]

Welcome, and sorry you had to find us, as we always say around here.

I do have something to blame for mine, cold. But as you may have

noticed I had a reaction possibly to the sun today, so often when you

get this mess I've noticed that sometimes it can be multiple

triggers...hard to pin down.

I'm on Periactin too. I take 4mg 3 times a day, sometimes 4. It did

make me so tired for the first week, but once I got through that I

was able to sort of get used to it. I have to take Zantac for my

stomach and stick to a low histamine diet. I am about to try adding

Singulair but I'm not sure I have much hope for it since most people

here have said it didn't really help.

There are plenty of knowledgable people around here, that can tell

you want to test for etc etc. They keep up on the newest meds and

stuff too. Then there are those who are just supportive. And then

there is me, I'm pretty useless but they let me stay. Haha.

Stick around and maybe we can help you pin down some triggers or at

least some relief. This thing causes different reactions in different

people so sometimes it's kind of hard to figure out and deal with. In

any case, were are here, just for venting if you need to.

Welcome again,

Alia

> Just wanted to say hello and how relieved I am to have finally

found

> you all! I will try to make my introduction as brief as possible,

but

> going to be hard as I have been battling these hives for years and

> been thru a lot as all of you, I also have " tons " of questions.. LOL

>

> I remember having hives all thru my childhood off and on, but they

> always seemed to go away or had reason to be there, but in

> summer of 00, they came to stay!! I had alot going on in my life

and

> passed them off as stress, so I suffered for almost a year before

> going to dr to get help or " jump off a cliff " LOL Dr. put me on

> Prednisone and this seemed to help, but then when time to taper,

came

> back full force again, then went to Z/Z treatment only 1xday no

help,

> so back on Pred for another few months w/same results, so he

referred

> me to Dermatologist, he gave me the low down on CU and blood

workup,

> xrays [all neg] started me on Periactin 4mg 2x day, and Doxepin

25mg

> bedtime along w/Pred 25 mg 3xday, The Pred worked, but the other

> zonked me that I literally fell asleep at work!! Then we tried

> Atarax/Zantac w/no results, This time when it came time to taper

the

> Pred, I got really sick and felt " flu like " skin burning,the head

> itching started again,and also got angioedema I couldnt funtion, he

> would " up " it again

>

> In Oct 01 after months of this and tired/frustrated/itchy and even

> more stressed, I decided to go see an Immunologist/Allergist, and I

> finally got answers.After discussing my symptoms/no changes in

> diet/detergents etc... he decided to do a blood serum test, to rule

> out " being allergic to myself " well, my test came out positive and

> was diagnosed as having " Autoimmune Chronic Uticaria " I was

> devestated to say the least, and not even sure what this is. I

> dont have anything to blame...food/solar/cold/heat/etc., none of

> this causes me to break out...its just always there! Dr sent me

for

> more blood work/xrays/urine, he wanted to rule out Lupus due to

> my symptoms, all came back fine.

>

> I have been on 180mg Allegra 3xday, and Zantac 150mg 2xday and

> was suppose to taper off as I felt I could, I did get to 1x day for

> about a month, now for 2 weeks I have been " feeling " them, and

> tired/achey/skin burning again and just a few get to pop out.

>

> So there is my story, sorry not so short, but hard to do and get

most

> of it out.I just dont know where to go from here, what to do, or

how

> this can be happening when I have been told that nothing I am

> doing/ingesting is causing this?? Has anyone every heard/had this

> Autoimmune CU, or is it the same as the others ??

>

> Thanks for being here, at least I can vent and not always complain

to

> hubby who has been so great but just doesnt fully understand what I

> have been going thru.

>

> Hugs and Prayers for you all to be hiveless!!

> Y

[Guest guest]

Hello and welcome, . Glad you found us, sorry you had to. Autoimmune

urticaria is quite common; in fact roughly half of all cases of chronic

urticaria are autoimmune. Some info from various websites:

" In about half of patients with chronic idiopathic hives, the explanation is

that body's immune system is, in a sense, overactive. The urticaria

represents an " autoimmune " phenomenon - the immune system (which is charged

with fighting off infection) is attacking the normal tissue of the body and

causing inflammation. One example of an autoimmune disease is rheumatoid

arthritis (inflammation of the joints). "

" In about half of patients with chronic idiopathic hives, the explanation is

that body's immune system is, in a sense, overactive. The urticaria is

" autoimmune " . The immune system is attacking the normal tissues of the body

and causing hives as a result. We know certain urticaria sufferers have

other signs of autoimmune problems. Some have autoimmune thyroid disease,

vitiligo, swollen joints, or certain abnormalities in the blood (especially

the ANA test). A new treatment has recently emerged for autoimmune

urticaria. This is the use of Plaquenil, a drug originally used for malaria.

In a recent trial 83% improved or cleared completely when used for three

months or more. "

" Chronic urticaria is most often due to autoimmune disease (allergy to one's

self), and may be associated with other autoimmune conditions such as

thyroid disease. Circulating 'anti-idiotypic' antibodies cause excessive

release of histamine. Recurrent angioedema without urticaria may be due to

C1 esterase deficiency (the protein C1 INH is missing or abnormal); there is

often a family history of similar problems. "

" Hives may also develop after infections or illness (including autoimmune

diseases , leukemia , and others). There seems to be a hereditary tendency

toward the development of hives.

Some nonallergic causes of hives include:

dermographism

cold urticaria

lupus erythematosus ( SLE )

echinococcus infection (dog tapeworm)

hereditary angioedema

Henoch-Schonlein purpura

mononucleosis

hepatitis

mastocytosis "

" Histamine releasing autoantibodies are present in the serum of 30-50 % of

patients with chronic ordinary urticaria. Autoantibodies have been detected

against the alpha-subunit of the high affinity IgE receptor

(Fc RI- ) on mast cells and basophils and against IgE.

Treatment of autoimmune urticaria patients with plasmapheresis, intravenous

immunoglobulin and cyclosporin A may benefit those with severe disabling

disease but the majority can be managed with antihistamines. "

Hope we can help you learn more about this crazy disease, and can help you

cope with it. For many of us, just knowing we're not the only ones makes a

huge difference!

Air hugs,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hello and welcome, . Glad you found us, sorry you had to. Autoimmune

urticaria is quite common; in fact roughly half of all cases of chronic

urticaria are autoimmune. Some info from various websites:

" In about half of patients with chronic idiopathic hives, the explanation is

that body's immune system is, in a sense, overactive. The urticaria

represents an " autoimmune " phenomenon - the immune system (which is charged

with fighting off infection) is attacking the normal tissue of the body and

causing inflammation. One example of an autoimmune disease is rheumatoid

arthritis (inflammation of the joints). "

" In about half of patients with chronic idiopathic hives, the explanation is

that body's immune system is, in a sense, overactive. The urticaria is

" autoimmune " . The immune system is attacking the normal tissues of the body

and causing hives as a result. We know certain urticaria sufferers have

other signs of autoimmune problems. Some have autoimmune thyroid disease,

vitiligo, swollen joints, or certain abnormalities in the blood (especially

the ANA test). A new treatment has recently emerged for autoimmune

urticaria. This is the use of Plaquenil, a drug originally used for malaria.

In a recent trial 83% improved or cleared completely when used for three

months or more. "

" Chronic urticaria is most often due to autoimmune disease (allergy to one's

self), and may be associated with other autoimmune conditions such as

thyroid disease. Circulating 'anti-idiotypic' antibodies cause excessive

release of histamine. Recurrent angioedema without urticaria may be due to

C1 esterase deficiency (the protein C1 INH is missing or abnormal); there is

often a family history of similar problems. "

" Hives may also develop after infections or illness (including autoimmune

diseases , leukemia , and others). There seems to be a hereditary tendency

toward the development of hives.

Some nonallergic causes of hives include:

dermographism

cold urticaria

lupus erythematosus ( SLE )

echinococcus infection (dog tapeworm)

hereditary angioedema

Henoch-Schonlein purpura

mononucleosis

hepatitis

mastocytosis "

" Histamine releasing autoantibodies are present in the serum of 30-50 % of

patients with chronic ordinary urticaria. Autoantibodies have been detected

against the alpha-subunit of the high affinity IgE receptor

(Fc RI- ) on mast cells and basophils and against IgE.

Treatment of autoimmune urticaria patients with plasmapheresis, intravenous

immunoglobulin and cyclosporin A may benefit those with severe disabling

disease but the majority can be managed with antihistamines. "

Hope we can help you learn more about this crazy disease, and can help you

cope with it. For many of us, just knowing we're not the only ones makes a

huge difference!

Air hugs,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hello and welcome, . Glad you found us, sorry you had to. Autoimmune

urticaria is quite common; in fact roughly half of all cases of chronic

urticaria are autoimmune. Some info from various websites:

" In about half of patients with chronic idiopathic hives, the explanation is

that body's immune system is, in a sense, overactive. The urticaria

represents an " autoimmune " phenomenon - the immune system (which is charged

with fighting off infection) is attacking the normal tissue of the body and

causing inflammation. One example of an autoimmune disease is rheumatoid

arthritis (inflammation of the joints). "

" In about half of patients with chronic idiopathic hives, the explanation is

that body's immune system is, in a sense, overactive. The urticaria is

" autoimmune " . The immune system is attacking the normal tissues of the body

and causing hives as a result. We know certain urticaria sufferers have

other signs of autoimmune problems. Some have autoimmune thyroid disease,

vitiligo, swollen joints, or certain abnormalities in the blood (especially

the ANA test). A new treatment has recently emerged for autoimmune

urticaria. This is the use of Plaquenil, a drug originally used for malaria.

In a recent trial 83% improved or cleared completely when used for three

months or more. "

" Chronic urticaria is most often due to autoimmune disease (allergy to one's

self), and may be associated with other autoimmune conditions such as

thyroid disease. Circulating 'anti-idiotypic' antibodies cause excessive

release of histamine. Recurrent angioedema without urticaria may be due to

C1 esterase deficiency (the protein C1 INH is missing or abnormal); there is

often a family history of similar problems. "

" Hives may also develop after infections or illness (including autoimmune

diseases , leukemia , and others). There seems to be a hereditary tendency

toward the development of hives.

Some nonallergic causes of hives include:

dermographism

cold urticaria

lupus erythematosus ( SLE )

echinococcus infection (dog tapeworm)

hereditary angioedema

Henoch-Schonlein purpura

mononucleosis

hepatitis

mastocytosis "

" Histamine releasing autoantibodies are present in the serum of 30-50 % of

patients with chronic ordinary urticaria. Autoantibodies have been detected

against the alpha-subunit of the high affinity IgE receptor

(Fc RI- ) on mast cells and basophils and against IgE.

Treatment of autoimmune urticaria patients with plasmapheresis, intravenous

immunoglobulin and cyclosporin A may benefit those with severe disabling

disease but the majority can be managed with antihistamines. "

Hope we can help you learn more about this crazy disease, and can help you

cope with it. For many of us, just knowing we're not the only ones makes a

huge difference!

Air hugs,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hi and welcome. I am sorry to hear you have been suffering for so

long. If you have been tested positive for autoimmune urticaria and have

also had cu for so long, have you ever been tested for mastocytosis? Were

you an " easy bruiser " growing up? Much Love, ~Alena's Mom

Newbie to site [sorry,very long]

> Just wanted to say hello and how relieved I am to have finally found

> you all! I will try to make my introduction as brief as possible, but

> going to be hard as I have been battling these hives for years and

> been thru a lot as all of you, I also have " tons " of questions.. LOL

>

> I remember having hives all thru my childhood off and on, but they

> always seemed to go away or had reason to be there, but in

> summer of 00, they came to stay!! I had alot going on in my life and

> passed them off as stress, so I suffered for almost a year before

> going to dr to get help or " jump off a cliff " LOL Dr. put me on

> Prednisone and this seemed to help, but then when time to taper, came

> back full force again, then went to Z/Z treatment only 1xday no help,

> so back on Pred for another few months w/same results, so he referred

> me to Dermatologist, he gave me the low down on CU and blood workup,

> xrays [all neg] started me on Periactin 4mg 2x day, and Doxepin 25mg

> bedtime along w/Pred 25 mg 3xday, The Pred worked, but the other

> zonked me that I literally fell asleep at work!! Then we tried

> Atarax/Zantac w/no results, This time when it came time to taper the

> Pred, I got really sick and felt " flu like " skin burning,the head

> itching started again,and also got angioedema I couldnt funtion, he

> would " up " it again

>

> In Oct 01 after months of this and tired/frustrated/itchy and even

> more stressed, I decided to go see an Immunologist/Allergist, and I

> finally got answers.After discussing my symptoms/no changes in

> diet/detergents etc... he decided to do a blood serum test, to rule

> out " being allergic to myself " well, my test came out positive and

> was diagnosed as having " Autoimmune Chronic Uticaria " I was

> devestated to say the least, and not even sure what this is. I

> dont have anything to blame...food/solar/cold/heat/etc., none of

> this causes me to break out...its just always there! Dr sent me for

> more blood work/xrays/urine, he wanted to rule out Lupus due to

> my symptoms, all came back fine.

>

> I have been on 180mg Allegra 3xday, and Zantac 150mg 2xday and

> was suppose to taper off as I felt I could, I did get to 1x day for

> about a month, now for 2 weeks I have been " feeling " them, and

> tired/achey/skin burning again and just a few get to pop out.

>

> So there is my story, sorry not so short, but hard to do and get most

> of it out.I just dont know where to go from here, what to do, or how

> this can be happening when I have been told that nothing I am

> doing/ingesting is causing this?? Has anyone every heard/had this

> Autoimmune CU, or is it the same as the others ??

>

> Thanks for being here, at least I can vent and not always complain to

> hubby who has been so great but just doesnt fully understand what I

> have been going thru.

>

> Hugs and Prayers for you all to be hiveless!!

> Y

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribe

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

,

This one rang a bell with me. I was and still am a very 'easy bruiser'. In fact, because of that and my heavy periods, I was tested for a bleeding disorder, which they found I do not have.

Interesting....

Love, Tami

[Guest guest]

,

This one rang a bell with me. I was and still am a very 'easy bruiser'. In fact, because of that and my heavy periods, I was tested for a bleeding disorder, which they found I do not have.

Interesting....

Love, Tami

[Guest guest]

Hi ,

Thanks for the welcome!! No, I have only been thoughly tested for Lupus, and

all came back negative, he really thought that is what was going on w/me.

Think that was because I have the same symptoms and the red face/ and

besides my hives I had deep hives under my skin in palms/feet that hurt and

itched like crazy.

As for the bruising, yes, I have always been a " easy bruiser " and still am,

and they are very painful too!

Hugs,

Y in KY

Newbie to site [sorry,very long]

>

>

> > Just wanted to say hello and how relieved I am to have finally found

> > you all! I will try to make my introduction as brief as possible, but

> > going to be hard as I have been battling these hives for years and

> > been thru a lot as all of you, I also have " tons " of questions.. LOL

> >

> > I remember having hives all thru my childhood off and on, but they

> > always seemed to go away or had reason to be there, but in

> > summer of 00, they came to stay!! I had alot going on in my life and

> > passed them off as stress, so I suffered for almost a year before

> > going to dr to get help or " jump off a cliff " LOL Dr. put me on

> > Prednisone and this seemed to help, but then when time to taper, came

> > back full force again, then went to Z/Z treatment only 1xday no help,

> > so back on Pred for another few months w/same results, so he referred

> > me to Dermatologist, he gave me the low down on CU and blood workup,

> > xrays [all neg] started me on Periactin 4mg 2x day, and Doxepin 25mg

> > bedtime along w/Pred 25 mg 3xday, The Pred worked, but the other

> > zonked me that I literally fell asleep at work!! Then we tried

> > Atarax/Zantac w/no results, This time when it came time to taper the

> > Pred, I got really sick and felt " flu like " skin burning,the head

> > itching started again,and also got angioedema I couldnt funtion, he

> > would " up " it again

> >

> > In Oct 01 after months of this and tired/frustrated/itchy and even

> > more stressed, I decided to go see an Immunologist/Allergist, and I

> > finally got answers.After discussing my symptoms/no changes in

> > diet/detergents etc... he decided to do a blood serum test, to rule

> > out " being allergic to myself " well, my test came out positive and

> > was diagnosed as having " Autoimmune Chronic Uticaria " I was

> > devestated to say the least, and not even sure what this is. I

> > dont have anything to blame...food/solar/cold/heat/etc., none of

> > this causes me to break out...its just always there! Dr sent me for

> > more blood work/xrays/urine, he wanted to rule out Lupus due to

> > my symptoms, all came back fine.

> >

> > I have been on 180mg Allegra 3xday, and Zantac 150mg 2xday and

> > was suppose to taper off as I felt I could, I did get to 1x day for

> > about a month, now for 2 weeks I have been " feeling " them, and

> > tired/achey/skin burning again and just a few get to pop out.

> >

> > So there is my story, sorry not so short, but hard to do and get most

> > of it out.I just dont know where to go from here, what to do, or how

> > this can be happening when I have been told that nothing I am

> > doing/ingesting is causing this?? Has anyone every heard/had this

> > Autoimmune CU, or is it the same as the others ??

> >

> > Thanks for being here, at least I can vent and not always complain to

> > hubby who has been so great but just doesnt fully understand what I

> > have been going thru.

> >

> > Hugs and Prayers for you all to be hiveless!!

> > Y

> >

> >

> >

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > If you do wish to unsubscribe then you can click on the following link:

> > urticaria-unsubscribe

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> >

> > This list is in the service of those who suffer from Chronic Urticaria

> (hives). We strive to support and lift each other as a worldwide

> cyber-family.

> >

> > We share whatever needs to be shared to help one another in our struggle

> with Chronic Urticria. Information provided in this forum is not to be

taken

> as medical advice. Always consult your health professional before trying

> anything new.

> >

> > Any posting that is off the main topic of Chronic Urticaria, we post

with

> a prefix of NCU -. This is done out of respect for those who do not wish

to

> read such postings.

> >

> >