Re: Please help me with the itching!

[Guest guest]

Hi Judy

I know exactly how you feel. The itching is terrible. I also have swelling

which drives me crazy especially when it is on my face or tongue. I hve also

been to the ER for my swelling and they gave me the sme as they gave you for

the itch.

I cannot get this under control. Maybe a few days goes by and I am hive free

but not much longer than that. It does wear your down. I sometimes get so

depressed over it. I am afraid to go on vacation to far from home. I am

afraid to get on a plane and then what if my tongue swells. I am afraid to

go to the islands because I do not trsust their hospitals.

Everyone on here is loooking for answers or at least a common denominator as

to why this is happening to us. I am going for acupuncture in another two

weeks. Some said that helped. I will keep you posted.

try to keep your chin up. cant get much worse.

Good luck

Sandy

[Guest guest]

Hi Judy i take Atarax and benadryl four times a day and it does control the

itching. It has helped me since he increased the atarax. It is hard to deal

with this mess i have had it for over a year just keep searching and you will

find the best way to deal with it. Good luck and keep me posted on how you

are doing. Therese in SC

[Guest guest]

One of the things that kins of helps with the itching is Sarno lotion. Keep

it in

the frid. that keeps it cold and spread it on the itching. Also helps with

skin .

It is over the counter. About $10. Also Aveeno Anti Itch cream. Also keep

fingernails cut short where you have to rub where it itches. Good Luck.

Carolyn

[Guest guest]

oh how i can relate

i dont know the answers

when i feel like i simply can not cope one more day, i seem to have a few

better days-but this has been constant fo rme for 2 1/2 years--at times it is

intolerable

this board has so many informative and helpful folks on it

i have conculed that only those who suffer as we, can truly understand

i am now ashamed of my body

b

[Guest guest]

, God Bless You. Now I'm in awe of what you have been through. I think

we are special people to put up with this. It will sure make a type " A " person

learn what patience is all about. I will even buy green bananas now. I have

learned to wait. You have learned how to live. Carolyn

[Guest guest]

Judy,

I'm crying as I read your story. Hypnotherapy is really helping me, along

with Zyrtec, Zileuton, Atarax and Trazadone. I do know of someone who had

this for over a year and is now in remission for at least two. Yes, we can

learn to live with this, however I BELIEVE mine will go away as

mysteriously as it came. In the mean time I hope my story helps. I posted

it on the urticaria@... and since I'm new to cyberworld, I don't

know if my story is there, here or where.

Take care and please don't give up.

Here is my story:

I am a new member and here is my painful story of severe urticaria and

hiving. I hope these words can help someone and of course I am also hoping

that someone out there may have some information that will help me. This

condition is so debilitating and it helps to know there are others out

there who understand.

In August of 1998 I developed a red itchy rash just on my chest. Just a

few months prior to this, I ended a very tumultuous five-year relationship

with a man who was very verbally abusive. Additionally, my 17-year-old

daughter began a two-year saga of lying and stealing that has ended in a

prison sentence. I work for a large insurance company and as a Manager I

assumed increased job responsibilities - yes I was under considerable

stress, but also enjoying the single life and the " status " my job gave me,

not realizing my life was about change dramatically.

In November of that year, over Thanksgiving weekend, I went on a ski trip

with a male partner that turned out to be very stressful. The rash went

from my chest to my whole body. I went to an Emergency Care clinic where I

was given Dexamethasone sodium, basically a steroid shot. The situation

improved for a short time and then in December it came back and I went to a

Dermatologist where I was treated for polymorphous light eruptions as well

as scabies and also given a Medrol Dosepak - more steroids. My symptoms

persisted but were manageable. It was definitely determined that I did not

have polymorphous light eruption or scabies. In December of 1998 my rash

continued to worsen. I was put on high doses of Atarax. I was then sent

to the top Dermatologist in my state. I was given Kenalog 60 mg. Again it

worked for a little while. Then the emergency room visits started. On

1/9/99 the itching became unbearable again and I went to the emergency room

at a local hospital where I was given Solumedrol 125 IV push - more

steroids. On 1/11/99 the Dermatologist put me back on Prednisone 20 mg.

daily for seven days and I was also given 60-mg. of Kenalog - more and more

steroids.

In late January we tried PUVA (light treatments). It made me itch worse.

During this time work responsibilities increased, I was traveling alot, my

daughter was getting into more trouble now that she was eighteen and my

personal life was intense. From February 1999 through May 1999 a

combination of a few light treatments, topical lotions and Atarax were

used. In June the rash came back with a vengeance. I was given 60 mg. of

Kenalog and 10 mg. of Zyrtex mg. daily with Clonazepman for sleep and

Prednisone 20 mg. for five days. During the next four months the horrible

itching was off and on. It never really presented itself in a full-blown

rash or hives because my system was so suppressed from all the steroids.

It was mostly a burning from the inside of my body out. Stress always

exacerbated it.

I was scheduled for a hysterectomy the end of October. Approximately one

week before, I was visiting my boyfriend in San Francisco and I had an

" extreme " attack. I could feel my skin itch and burn just beneath the

surface for approximately two days. We attended a concert the evening of

October 21 and I became so uncomfortable I had to be taken to the Stanford

emergency room. I was given Solumedrol and benydryl push. I was also

given Prednisone .40 mg. daily to take until my surgery, which took place

on October 27. The surgery went very well, however due to the high dose of

Prednisone I was given while in California it was necessary to be give 125

mg. Solu-Medrol IV piggyback over 30 minutes post surgery. Does this give

any one a clue that I am being Prednisoned to death.

In December my condition worsened, the itching was horrible, I'm trying to

work and the effects of all the steroids were really beginning to show. I

couldn't sleep, my ability to concentrate was deteriorating and during all

this I was trying to maintain a long distance relationship. The

Dermatologist put me back on Prednisone 20 mg. per day then down to 5.

I'll admit I was terrible about taking the Prednisone as prescribed, I'd

feel some relief and the side effects of the Prednisone were horrible so I

quit taking it sometimes in the middle of the dosepack. I was also on

several antihistamines and I would quit taking those because I could not

function at work. I had an MRI scan and everything was fine. During this

time my legs became intermittently inflamed and swollen. Blood work was

ordered and nothing showed.

In mid December I was sent to the top Allergist in the state. He did some

food allergy testing and nothing showed because I was so suppressed from

the steroids. I had been on Doxepin that the Dermatologist had me try with

very little success. The allergist prescribed Zyrtex and Zantac and told

me I was just stressed. I went to San Francisco to visit my boyfriend on

January 25. While there, I had another sever attack. My skin was burning

and itching uncontrollably. I went to the emergency room of El Camino

hospital where I was given Prednisone again.

In February, it was determined, with my insistence that I be sent to the

Mayo clinic. I was in terrible shape and again I was put on a Prednisone

taper and Prozac. I could not sleep, had incredible headaches, was

exhausted and the itching and burning was much, much worse. On February

21, 2000 I went to the Mayo Clinic where I was evaluated and tested by an

allergist, dermatologist and a psychiatrist. The summations of my weeklong

visit and many tests was basically I had been " over Prednisoned " , and I was

sent back to Boise.

I was miserable. I turned to alternative medicine. I went to see an

acupuncturist, network spinal chiropractic, a nutritionist and joined a

healing group. I was sliding downhill fast. In April I had another

horrible attack and ended up in the emergency ward again where I was given

Prednisone again. Nothing worked; I felt my life slipping out of my hands.

At the end of April I could do nothing except lie in bed and take sleeping

pills to keep me out of my misery. I was doing colonics trying every

homeopathic remedy suggested. I was truly ready to commit suicide.

As a last resort and what I truly think saved my life, my nutritionist sent

me to CHIPSA hospital in Mexico. CHIPSA's main focus is terminal cancer,

however they also take chronic disease. I hardly remember going down there

I was so near the end of my life. I truly feel I was barely connected to

the earth. I spent seven agonizing weeks at CHIPSA. God bless these

people, as I truly believe they saved my life. Their program is intense

detoxification through the Gerson diet, coffee enemas, and supplements. I

underwent Hyperbaric Oxygen therapy, auto hemoglobin therapy, the Issels

vaccine, (this was taking my own blood and making a serum from it in the

hopes of having my own blood cells destroy the bad ones and make goods ones

- this is definitely my laymen's version) and Coley's Toxins. The Coley's

toxin is used as a stimulation of immune response. It is an immune

stimulating, injectable (dead) bacterial reagin documented historically to

have cured many cases of advanced cancer.

I can't begin to tell you how much courage it took to do this program.

They said that detoxing from Prednisone was worse than detoxing from

cocaine. The pain and trauma that I endured is more than I can even write

about. However, the wonderful part is that I did detox from the Prednisone

and as I said, I think this alone saved my life. As for the rest of the

program, I'm not sure that it helped find the source or improved my

original condition, however it has opened the doors to at least show that

my eocyniphyl count is way up, so testing now shows what is happening in

body without all the Prednisone. In other words, my immune system is not

so suppressed that nothing shows.

Also while in Mexico I had all my mercury fillings replaced with amalgams.

I was going to have a root canal taken out and two cavitations done,

however those are now scheduled for September. I don't know if that will

help. To say that I've been through so much that one more " procedure "

really is daunting is an understatement.

I'm currently taking 20 mg. of Zyrtec, 600 mg. of Zileuton 4 x per day,

during the day and 25 to 75 mg. of Atarax and 25 mg, of Trazodone at night.

Believe me, I hate taking these drugs, but they are at least keeping the

horrible attacks under control. When I say attacks, this is what happens.

I start to itch in a certain area. If I start to scratch it spreads

uncontrollably all over my body. I scratch until I bleed. I feel like a

caged dog that keeps biting itself. My skin then hurts for days. Showers

make me itch, heat, cold and any kind of anxiety.

While this has been a horrific experience it has also led me to some

incredible insights about myself. I am truly learning what is important in

life. In the past year I have spent over $65,000 dollars. This is my own

money, this does not include what my insurance has paid. I had to sell my

house and I've lost a relationship that was very dear to me. However, I am

discovering who I really am and what I can offer to the universe.

Again, I hope my story helps someone and I welcome any insights or help any

of you can give me. As much as I hate to know others are suffering, it is

so helpful to have support.

[Guest guest]

Judy and all, I been asking these questions to myself (and anyone who'd listen)

for years!!

On a better note...I had a mid-year review at work the past week, and my

immediate supervisor told me that a former neighbor of his

had the same condition that I did, and that he could understand what I was going

through. That made me feel so much better, because

I've missed sooo much work in the past year and a half! Still on the yeast-free

diet, still have hives, though small and what I

consider " under control " .

~~Barbara

------------------------

1. What works for you all? What keeps the horrible itching under control?

2. Does anything keep the hives away?

3. How do you live day to day with this?

4. anyone know any good MDs that can treat this?

5. How do we survive the itching and still want to live?

[Guest guest]

Dearest --

I'm just beginning on my own uticaria roller coaster

ride, and I totally admire you. I was finally

diagnosed with major depression a few years ago after

fighting it for ten years. I understand the

desperation and emotional effects that something

chronic can pile on. Please continue to share. For

me, just writing my story was helpful, and reading

yours has been too. We are all here to love and

support one another. Good luck

- (Kat)

--- " L. York "

wrote:

> Judy,

>

> I'm crying as I read your story. Hypnotherapy is

> really helping me, along

> with Zyrtec, Zileuton, Atarax and Trazadone. I do

> know of someone who had

> this for over a year and is now in remission for at

> least two. Yes, we can

> learn to live with this, however I BELIEVE mine will

> go away as

> mysteriously as it came. In the mean time I hope my

> story helps. I posted

> it on the urticaria@... and since I'm new to

> cyberworld, I don't

> know if my story is there, here or where.

>

> Take care and please don't give up.

>

> Here is my story:

>

>

> I am a new member and here is my painful story of

> severe urticaria and

> hiving. I hope these words can help someone and of

> course I am also hoping

> that someone out there may have some information

> that will help me. This

> condition is so debilitating and it helps to know

> there are others out

> there who understand.

>

> In August of 1998 I developed a red itchy rash just

> on my chest. Just a

> few months prior to this, I ended a very tumultuous

> five-year relationship

> with a man who was very verbally abusive.

> Additionally, my 17-year-old

> daughter began a two-year saga of lying and stealing

> that has ended in a

> prison sentence. I work for a large insurance

> company and as a Manager I

> assumed increased job responsibilities - yes I was

> under considerable

> stress, but also enjoying the single life and the

> " status " my job gave me,

> not realizing my life was about change dramatically.

>

>

> In November of that year, over Thanksgiving weekend,

> I went on a ski trip

> with a male partner that turned out to be very

> stressful. The rash went

> from my chest to my whole body. I went to an

> Emergency Care clinic where I

> was given Dexamethasone sodium, basically a steroid

> shot. The situation

> improved for a short time and then in December it

> came back and I went to a

> Dermatologist where I was treated for polymorphous

> light eruptions as well

> as scabies and also given a Medrol Dosepak - more

> steroids. My symptoms

> persisted but were manageable. It was definitely

> determined that I did not

> have polymorphous light eruption or scabies. In

> December of 1998 my rash

> continued to worsen. I was put on high doses of

> Atarax. I was then sent

> to the top Dermatologist in my state. I was given

> Kenalog 60 mg. Again it

> worked for a little while. Then the emergency room

> visits started. On

> 1/9/99 the itching became unbearable again and I

> went to the emergency room

> at a local hospital where I was given Solumedrol 125

> IV push - more

> steroids. On 1/11/99 the Dermatologist put me back

> on Prednisone 20 mg.

> daily for seven days and I was also given 60-mg. of

> Kenalog - more and more

> steroids.

>

> In late January we tried PUVA (light treatments).

> It made me itch worse.

> During this time work responsibilities increased, I

> was traveling alot, my

> daughter was getting into more trouble now that she

> was eighteen and my

> personal life was intense. From February 1999

> through May 1999 a

> combination of a few light treatments, topical

> lotions and Atarax were

> used. In June the rash came back with a vengeance.

> I was given 60 mg. of

> Kenalog and 10 mg. of Zyrtex mg. daily with

> Clonazepman for sleep and

> Prednisone 20 mg. for five days. During the next

> four months the horrible

> itching was off and on. It never really presented

> itself in a full-blown

> rash or hives because my system was so suppressed

> from all the steroids.

> It was mostly a burning from the inside of my body

> out. Stress always

> exacerbated it.

>

> I was scheduled for a hysterectomy the end of

> October. Approximately one

> week before, I was visiting my boyfriend in San

> Francisco and I had an

> " extreme " attack. I could feel my skin itch and

> burn just beneath the

> surface for approximately two days. We attended a

> concert the evening of

> October 21 and I became so uncomfortable I had to be

> taken to the Stanford

> emergency room. I was given Solumedrol and benydryl

> push. I was also

> given Prednisone .40 mg. daily to take until my

> surgery, which took place

> on October 27. The surgery went very well, however

> due to the high dose of

> Prednisone I was given while in California it was

> necessary to be give 125

> mg. Solu-Medrol IV piggyback over 30 minutes post

> surgery. Does this give

> any one a clue that I am being Prednisoned to death.

>

>

> In December my condition worsened, the itching was

> horrible, I'm trying to

> work and the effects of all the steroids were really

> beginning to show. I

> couldn't sleep, my ability to concentrate was

> deteriorating and during all

> this I was trying to maintain a long distance

> relationship. The

> Dermatologist put me back on Prednisone 20 mg. per

> day then down to 5.

> I'll admit I was terrible about taking the

> Prednisone as prescribed, I'd

> feel some relief and the side effects of the

> Prednisone were horrible so I

> quit taking it sometimes in the middle of the

> dosepack. I was also on

> several antihistamines and I would quit taking those

> because I could not

> function at work. I had an MRI scan and everything

> was fine. During this

> time my legs became intermittently inflamed and

> swollen. Blood work was

> ordered and nothing showed.

>

> In mid December I was sent to the top Allergist in

> the state. He did some

> food allergy testing and nothing showed because I

> was so suppressed from

> the steroids. I had been on Doxepin that the

> Dermatologist had me try with

> very little success. The allergist prescribed

> Zyrtex and Zantac and told

> me I was just stressed. I went to San Francisco to

> visit my boyfriend on

> January 25. While there, I had another sever

> attack. My skin was burning

> and itching uncontrollably. I went to the emergency

> room of El Camino

> hospital where I was given Prednisone again.

>

> In February, it was determined, with my insistence

> that I be sent to the

> Mayo clinic. I was in terrible shape and again I

> was put on a Prednisone

> taper and Prozac. I could not sleep, had incredible

> headaches, was

> exhausted and the itching and burning was much, much

> worse. On February

> 21, 2000 I went to the Mayo Clinic where I was

> evaluated and tested by an

> allergist, dermatologist and a psychiatrist. The

> summations of my weeklong

> visit and many tests was basically I had been " over

> Prednisoned " , and I was

> sent back to Boise.

>

> I was miserable. I turned to alternative medicine.

> I went to see an

> acupuncturist, network spinal chiropractic, a

> nutritionist and joined a

> healing group. I was sliding downhill fast. In

> April I had another

> horrible attack and ended up in the emergency ward

> again where I was given

> Prednisone again. Nothing worked; I felt my life

> slipping out of my hands.

> At the end of April I could do nothing except lie

> in bed and take sleeping

> pills to keep me out of my misery. I was doing

> colonics trying every

> homeopathic remedy suggested. I was truly ready to

> commit suicide.

>

=== message truncated ===

__________________________________________________

[Guest guest]

Dearest,

I know that this is tough, as are many diseases, but

one thing that my loving mom tells me all the time is

that you can be frustrated, annoyed, tired, desperate,

or anything else about your disease, but not ashamed.

This is not your fault. You didn't ask for it. It

wasn't something you did that caused it. You're doing

your best to live with it, and that's all anyone can

ask. People don't need to be ashamed of diabetes,

nearsightedness, leukemia, or hundreds of other

diseases. We do not have to be ashamed of the

uticaria. I don't want to sound preachy, I know that

for years my mom sounded preachy to me, but one of the

times she said that to me, it sunk in, and I started

to believe it. If you need to, make yourself a sign

and hang it on the wall. Have it say some positive

affirmation of your self. " I am a good person, I am

sick, but I can still offer a lot to the world "

something like that. read it when you need to. make

a tape of comforting songs -- I'm sure you know the

ones that will work for you -- and play it when things

get really bad. And above all, continue to lean on

your support group. We're here for you, and I'm sure

others are as well. It actually makes them happier to

releave some of your despair.

- (Kat)

--- we4nnm@... wrote:

> oh how i can relate

> i dont know the answers

> when i feel like i simply can not cope one more day,

> i seem to have a few

> better days-but this has been constant fo rme for 2

> 1/2 years--at times it is

> intolerable

> this board has so many informative and helpful folks

> on it

> i have conculed that only those who suffer as we,

> can truly understand

> i am now ashamed of my body

> b

>

__________________________________________________

[Guest guest]

You can't let this condition rule your life entirely. I monitor my

activities to avoid doing anything that will aggravate the angio. And I

haven't let the urticaria prevent me from traveling as much as I can. I even

spent a wonderful month in England, well equipped with an epi kit and scripts

for prednisone and whatever else I was on at the time. I've been to Mexico

dozens of times and always take meds with me.

The worst trip was to visit family in Monterey, CA as I was coming off a

course of pred. I had one of the worst rebounds that I have ever

experienced. In retrospect, I should have gone into an ER, but that was when

I thought this was something I had to endure. I waited 3 days until my

sister's father-in-law (a doctor) came back into town and gave me a new

prescription for Pred. Very stupid of me to make myself suffer.

It helps if you know what the best treatment is in case of an ER visit. It's

amazing how many times they'll just do what you tell them to do.