It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Autoimmune Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 06-08-2011, 06:49 PM   #1
Newbie
(female)
 
Join Date: Jun 2011
Location: Lexington, SC USA
Posts: 8
TheCurse HB User
ACIU? Help! Chronic hives and more

I'm a 25 year old female with multiple symptoms, hives being the worst. I was 14 the first time I had hives, tey lasted for 3 weeks. Four years later I wake up to them on my legs, later that day I ended up in the ER head to toe covered, vomiting and fever. My blood pressure dropped to 60/40, left lung 100% infiltrated, right lung 55% (working off of 45% of one lung) was admitted to the ICU and the Drs had no clue what was going on, vitals remained unstable for 4 days. After another 3 days of observation they sent me home on Prednisone and 5 different antihistimines, I still had hives.
The hives went on for 2 years with no explanation. Had all allergy tests done and nothing came back positive. I was in and out of hospitals. One allergist looked at me and said just by looking he could tell it wasn't allergic. I had horrible abdominal pain, he said it was likely that I had the rash covering my organs.
Out of nowhere they went away and had no hives for another four years.
In the meantime, I was diagnosed with gastroparesis and had pyloroplasty done to correct it.
I was diagnosed with fibromyalgia and arthroalgia.
My liver is abnormally large, touching both my sides but they say it functions normally.
I've had Kidney stones on and off since I was 11, Frequent UTI's.
Migraines on and off since 10.
Pleurisy (inflammation of lining of lungs) since 10.
Hands and feet always cold.
Joints and bones ache, muscles burn.
Livedo reticularis.
Inappropriate sinus tachycardia.
esophageal dysfunction.
These are most of the things I suffer from on a regular basis.

November 18, 2010 my hives came back. I have had them every day since then. I do get edema with some of them and also have vasculitis as a result of some. The worst is when I get them on my feet, they feel like they're going to split open. None of the antihistimines have worked. They put me on a high dose of Prednisone and they broke through within 3 days. My dermatologist did lots of blood work and everything was normal. She sent me to a Rheumatologist in Charleston (I live in Lexington SC). She ran some tests and the only thing to stand out was IgE level was through the roof at 75,000. She has been no help what so ever other than running that test. My dermatologist told me that Cyclosporine might help. I am a vet's assistant and we use it in dogs with autoimmune disorders so I know what it is and how it works. The rheumatologist doesn't want to put me on it and I don't want to drive 200 miles and pay her when she isn't willing to try this. My dermatologist says she doesn't know of anyone close to me that would prescribe it for Autoimmune Chronic Idiopathic Urticaria (what I am now diagnosed with) . I don't know what to do and no one seems to want to help me.
Anyone have any suggestions or know of any good specialists in SC, NC, GA?

 
Sponsors Lightbulb
   
Old 06-08-2011, 07:50 PM   #2
Junior Member
(female)
 
Join Date: Mar 2011
Location: SF Bay Area
Posts: 17
GoodDog HB UserGoodDog HB User
Re: ACIU? Help! Chronic hives and more

I'm so sorry for all you have been through and still are going through. I wish I could be of some help but I did want you to know that I am here and will listen. For 20 years I've had Autoimmune Chronic Idiopathic Urticaria and Delayed Pressure Urticaria so I know how miserable you feel.

It's so frustrating that doctors pass us off and treat us like it isn't all that bad. I wish they could be in our bodies for just one day before they brush us off. For me, when mine isn't somewhat controlled life isn't worth living so any treatment is better no matter what the long term effects may be.

I'm doing okay on Prednisone but since the weather has changed it started flaring again. I sure don't look forward to summer and the varying rashes I get. I took antihistamines for years but now when I take them I feel like I'm losing my mind. I've developed what's called a paradoxical response to them and my hives are also worse when I take them.

I hope you can find a doctor to treat you with whatever may work. One that isn't too afraid to try new things. I've been to many doctors that act like it's only a rash and they don't have a clue how we feel.

Good luck and please keep us posted.

 
The Following User Says Thank You to GoodDog For This Useful Post:
TheCurse (06-09-2011)
Old 06-09-2011, 05:35 PM   #3
Newbie
(female)
 
Join Date: Jun 2011
Location: Lexington, SC USA
Posts: 8
TheCurse HB User
Re: ACIU? Help! Chronic hives and more

Some times I feel like doctors aren't real people. I too wish that they could live a day in my shoes or the shoes of anyone who suffers from the illnesses they decide to specialize in. Lately I've been wondering if they only go to school to figure out which pharmaceutical company they're going to support throughout their career.
I very much appreciate you offering to listen, you are a rare commodity to my life. I only have one person I can talk to about my problems face to face that knows how I feel. My grandmother has a lot of autoimmune problems and I know one day she won't be here for me to talk to anymore. At least I do have her for now.
I wonder a lot about why I pay health insurance when I just get treated like an idiot or looked over because they just don't care. At the very least we can all ban together for support, I'm here for you as well.

 
Old 06-09-2011, 06:16 PM   #4
Junior Member
(female)
 
Join Date: Mar 2011
Location: SF Bay Area
Posts: 17
GoodDog HB UserGoodDog HB User
Re: ACIU? Help! Chronic hives and more

Your post touched my heart because I remember how it was going from doctor to doctor without getting anyone to help me. I was desperate and they treated me like I was a mental case. If they were flared up with hives like many of us have they would come across like that too. It makes me a nervouse wreck when i can't get them under control.

Today my dermatologist said that hives cause an "annoyance" for many of his patients! Can you believe he called it an annoyance?!?!?!!! I used that opportunity to "educate" him a little and he didn't say a word. I won't go back to him but I thought of his patients and how they must feel because of his lack of understanding and compassion.

I finally found a woman allergist that is helping me. The first visit I had with her I was covered in hives and crying. I told her that I didn't want to live if I had to live like this. She's the first doctor that listened to me and she has been able to help me a lot. I still get hives but I can manage them most of the time and they aren't so bad I don't want to live any more. I take doxepin and prednisone since I can't take antihistamines any more.

I really hope you can find someone to help you. Please don't give up, you just need to make them hear you and try to communicate the urgency and the extreme misery you're in. It's hard to find a doctor that "wants" to help us and I don't know why.

Have you been tested for Lupus? Many of your symptoms sound like it could be what's going on. It took me 10 years to get diagnosed so don't expect that to be easy either. Sometimes it takes that long for the right blood tests to show it and at the right time. It's not as simple as a single blood test and symptoms are also included in the diagnosis. Google Lupus and see what you think. I wish you the best.

 
Old 06-14-2011, 03:46 PM   #5
Newbie
(female)
 
Join Date: Jun 2011
Location: Lexington, SC USA
Posts: 8
TheCurse HB User
Re: ACIU? Help! Chronic hives and more

Quote:
Originally Posted by GoodDog View Post
Your post touched my heart because I remember how it was going from doctor to doctor without getting anyone to help me. I was desperate and they treated me like I was a mental case. If they were flared up with hives like many of us have they would come across like that too. It makes me a nervouse wreck when i can't get them under control.

Today my dermatologist said that hives cause an "annoyance" for many of his patients! Can you believe he called it an annoyance?!?!?!!! I used that opportunity to "educate" him a little and he didn't say a word. I won't go back to him but I thought of his patients and how they must feel because of his lack of understanding and compassion.

I finally found a woman allergist that is helping me. The first visit I had with her I was covered in hives and crying. I told her that I didn't want to live if I had to live like this. She's the first doctor that listened to me and she has been able to help me a lot. I still get hives but I can manage them most of the time and they aren't so bad I don't want to live any more. I take doxepin and prednisone since I can't take antihistamines any more.

I really hope you can find someone to help you. Please don't give up, you just need to make them hear you and try to communicate the urgency and the extreme misery you're in. It's hard to find a doctor that "wants" to help us and I don't know why.

Have you been tested for Lupus? Many of your symptoms sound like it could be what's going on. It took me 10 years to get diagnosed so don't expect that to be easy either. Sometimes it takes that long for the right blood tests to show it and at the right time. It's not as simple as a single blood test and symptoms are also included in the diagnosis. Google Lupus and see what you think. I wish you the best.




Well I found a dermatologist that I THOUGHT was my chance. I was at wits end and balling my eyes out. She hugged me and told me we would find the answer no matter what. Now I can't get her to return my phone calls. She sent me to the Rheumatologist that said I have ACIU. I don't get anywhere with her either and it doesn't help the fact that she's 200 miles away. So I guess I'm just going to request a copy of my records to save for the next doc that I decide to give a try.
I've been tested over and over but my ANA's are never abnormal, so they rule out lupus even though you can have it without a positive ANA. I don't have the classic lupus symptoms either. I don't know what the heck I have.
I've been lucky to find people to work for that understand, my boss' wife (who basically runs the clinic) has lupus.
I had an internal med doc ask me if I had sought out mental help, I won't repeat what I replied. Worst of all is when family doesn't really understand or they disagree with what's going on. Every time I get sick, cold or bug, the hives get way worse. And I'm sick now so it's really a drag at the moment.
These days I feel I would rather pull out 3 20 dollar bills and set fire to them than to go spend it to go to a specialist. I hate it when they say that "part of the treatment is to accept that there's nothing we can really do"....ugh

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Please help! Do you recognize these symptoms? SeekingHope Autoimmune Disorders 23 09-05-2012 03:13 AM
positive ana, positive rf, muscle and joint pain... help??? mandi_hart330 Autoimmune Disorders 9 05-06-2012 01:28 AM
Hypothyroid and AI very sick help nattalsnakes Autoimmune Disorders 10 01-19-2012 07:18 AM
Do you think I have an Autoimmune Disorder? maniac21 Autoimmune Disorders 9 04-14-2011 10:09 PM
Help please! gcbpgh Autoimmune Disorders 8 04-04-2011 11:44 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



VeeJ (56), ladybud (52), luca689 (30), jennybyc (9), neveragain444 (3), Wondering189 (3), jacq42 (2), paperbgprinces (2), briminnan (2), firemom31 (2)

Site Wide Totals

teteri66 (1165), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 06:15 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!