urticaria & anaphylaxis

July 22, 2001

My name is Sue and although this is my first time posting, have been reading

for several weeks. I am 43 and began CU & angioedema when I was 20 years

old. Until the last 2 years my episodes would come for 2-3 months and be

gone for 1-2 years. This time however they have remained for 2 years with

the exception of 6 months. I like most of you have tried many things, had

blood work, etc. I am on the Zyrtec/Zantec combo also. My allergist also

has had me on Acyclovir (sp?)since this often cycles like a herpes virus.

She said that her partner treats all urticaria with this medication. I

couldn't refill it this time because of insurance change that doesn't cover

much of the 430. for a month's supply. Has anyone else used this medication

? It is for herpes.

Beginning a year ago my symptoms also included what we think is anaphylaxis.

I have called the aide car twice and been transported once. It has been

confusing because my blood pressure doesn't drop like true shocking would.

I also have never gone unconscious. I carry (and have used) 2 epiepens and

wear a medical necklace. I have also had some breathing difficulties and

hoarseness. I have had several incidents however that are confusing. I

wanted the opinion of those of you who are " shockers " or are familiar with

the symptoms. This has happened 3 times where I get " waves " of symptoms as

follows. This morning out of the blue walking in the parking lot at church,

I began feeling this terrible feeling. It is as if my insides are sinking

and the outer layer is chilled. It is a HORRIBLE feeling. Between waves of

this I always get diarrhea. I have had this at the hospital before with

blood pressure monitored and it doesn't change. The feeling is hard to

describe - impending doom is a good way. I continued in the church and had

to leave after about 10 minutes. I took some benadryl and had epipen ready.

We left and the feeling seemed to pass. Since this also sounds like panic

attacks, I am recently on Celexa (anti depressant) to see if it is anxiety

induced. This was the first episode in 2 weeks I've been on the meds. The

other day I read that there are symptoms that can come before shocking. I

have been told by Dr. that if you go into anaphylaxis you don't come out on

your own. Any information about your experiences with this would be

helpful.

I have an follow up appointment tomorrow with an internist to review more

test results. I did have Graves disease 2 years previous to symptoms

appearing. I am on Synthroid but she noted that my TSH has followed a

pattern of dropping. She also discovered a heart murmur that I will see a

cardiologist for an echo gram. I have also had a tilt table test which

tries to stimulate fainting which it didn't. I am always so healthy!!

Through this all I've always known God is with me and its nice to have all

of you too. You feel a little " silly " at times but know it is all so real.

Sue

Re: urticaria

Hi Lucielle, A big warm welcome to the group. Nope you are not alone ;o) I

am glad you are finding information. I am sad to hear you are cancelling

your trip. Does your med combo not work effectively? If not please talk to

your doctor about trying a different combo. Sometimes it takes a bit of

trial and error. Also I am sure as you have been reading there are lots of

reasons for CU~have you had any dental work done? are you on birth control

pills? can you link food as a trigger? there are diets that may be of help.

So many reasons. Hopefully you will find your cause and rid yourself of

this. Love, ~Alena's Mom

urticaria

> Hi everyone. I have been reading all the postings

> for a couple of weeks and have really had my eyes

> opened. Here I thought I was all alone out there.

> I have learned a great deal about what is happening

> to my body and will have lots of questions for my

> allergist when I see him next week.

>

> At present I am taking Reactine, Singulaire and

> ranitidine. I have good days and bad days. I can

> handle the normal red, itchy hives, but those big

> purple wheals that last for several days and leave

> a bruise that lasts another several days are hard

> to cope with. I most often have them between my

> legs making it difficult (if not impossible) to

> walk very far.I ended up in the hospital in the

> winter with severe angioedema.

>

> I have been checked for Lupus and am going in

> to London next week for all the thyroid tests.

>

> What is really upsetting me is having to cancel

> a trip to New Zealand and Australia (I thought the

> urticaria would be gone by now) for which I have been

> saving for a couple of years. I'm just afraid to go.

>

> Thanks for listening. Lucielle

>

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

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

>

> 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.

>

July 22, 2001

Sue asked about:

"Acyclovir"..."Has anyone else used this medication"

ruthe rites:

Yep...Valtrex (Valcyclovir HCL) 500mg qd. It's similar to Acyclovir. It's more bioavailable so taken less frequently. I was infected with hsv2 a year ago and CU/AE went wild (after 6 years of relative control with one itty bitty 10 mg Claritin and the occasional Medrol pack). My complement levels are low which may explain H having such a major impact on my health (it's not common to have the reactions I'm having). I stay on antiviral therapy to help control H which is likely a CU/AE trigger. I'll test this (go off Valtrex) when CU/AE stabilize.

hth,

ruthe

July 22, 2001

Interesting. Do you know what you pay for Valtres. As I mentioned, Acyclovir is way too expensive 420. for a month. I had things mostly under control until I came off of Acyclovir.

Thanks for your help,

Sue

-----Original Message-----From: ruthemm@... Sent: Sunday, July 22, 2001 8:18 PMTo: urticaria Subject: Re: urticaria & anaphylaxis Sue asked about: "Acyclovir"..."Has anyone else used this medication" ruthe rites: Yep...Valtrex (Valcyclovir HCL) 500mg qd. It's similar to Acyclovir. It's more bioavailable so taken less frequently. I was infected with hsv2 a year ago and CU/AE went wild (after 6 years of relative control with one itty bitty 10 mg Claritin and the occasional Medrol pack). My complement levels are low which may explain H having such a major impact on my health (it's not common to have the reactions I'm having). I stay on antiviral therapy to help control H which is likely a CU/AE trigger. I'll test this (go off Valtrex) when CU/AE stabilize. hth, ruthe ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribeegroups~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~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.

July 22, 2001

Hi Sue,

I'm glad you decided to post. There are two conditions which are

similar but different..... one is called anaphylaxis and the other is

called an anaphylactoid response. It is like having two road

choices to the same destination..... one is a super highway, the

other a meandering country road..... eventually they both can arrive

at the same spot. Anaphylaxis always produces a b/p drop and an

elevated heart rate, this is a life threatening emergency. The

anaphylactoid response, if progressive, will eventually produce this

symptom but it might take awhile. Diarrhea is a common symptom of

the anaphylactoid response. You also ask about " self-resolving " .....

yes there are patients who do self resolve in the middle of a

crisis.... My daughter's Stanford University Dr, who trained under

the leading immunologist in the world, regarding Idiopathic

Anaphylaxis, a Dr of Chicago, told us that..... BUT, he

added, just because a patient tends to " self-resolve " , doesn't mean

they ALWAYS will and every precaution should be taken because you do

not know which time the patient will or will not self-resolve.

The " waves " and the feeling of impending doom are quite consistant

with either anaphylaxis or anaphylactoid response. Hope this

helps. hugs, Myra

July 22, 2001

I can vouch for what Myra said about anaphylaxis self-resolving, since I've

had it happen. Sometimes it immediately comes back, other times it stays

backed off. And she's also right that just because it self-resolves

sometimes, or even a lot of times, doesn't mean it will ALWAYS self-resolve.

Many doctors think it doesn't self-resolve, by the way, unless they have a

lot of experience with CU'ers. I believe this is because they think of

anaphylaxis in terms of allergy induced, which is somewhat different from

what we are experiencing. If it's a true allergic reaction causing a patient

to go into shock, then I think it's true that it won't resolve.

Air hugs,

Jackie

Life is tough, but I'm tougher.

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July 23, 2001

What a wonderful group you are. Thanks for the responses back about

anaphylaxis and Acyclovir.

I met with my immunologist today who, surprise I have " stumped. " She was

willing however to not give up the search. She took my list that I had from

the group of test to be done and did quite a few including H Pylori. My

gen. doc. wouldn't run that. She also wants me to be seen by either the

University of Washington Immunology Clinic in Seattle or The Nation Jewish

Center in Colorado. Has anyone been seen by either of these clinics or do

you have a suggestion. I live in Seattle but am willing to travel.

Since I am on nothing but rice and chicken she suggested baby foods - yuck.

Kind of the same idea as serving infants one food at a time. What do you

guys think of that?

Thanks,