Please help! Chronic unexplained hives!

[krystleball]

Hi.
I'm brand new to this site, so please excuse me if I seem like I don't know what I'm doing or how exactly this whole thing works in advance...

But, I have had huge hives or welts, since August. I've seen specialists and been in hospitals and have had every test (as far as I know) run on me, with no real etched in stone answers.. Just some "this is what it might be", "this is what might help" and every doctor (even some within the same office but different specialties) disagrees with the other.. Everyone seems to have their own ideas, but no real answers..

I've been told I have everything from mrsa to toxic erythema multiforme to vasculitis to cellulitis to angioedema... But never anything to really back it up, except for the mrsa.. Every test the doctors have done on me comes back normal, with the exception of my Immunglobulin E being high, my triglycerides are high and my ASO count being high (forgive me if I don't have the terminology down yet).

The hives come and go, but mostly they just keep coming.. There is nothing I have done/ ate/ bought that was or is abnormal.. I've been on Prednisone, Solumedrol, Doxepin, Xyzal, Zyrtec, Loratadine, Benadryl, Ranitadine, Aciphex, Nexium, Calcium Tabs, Mag-Ox, Lexapro (for the stress and anxiety of dealing with this illness for the last 5+ months), Xanax (as needed) as well. I think that's all of them. Nothing helps. Nothing keeps them away. The prednisone helped in the start, Doxepin helped for about a month.. Stress seems to make them worse, but doesn't cause them..

The hives start out really small and grow and grow and grow. When one spot gets too big and my skin feels like it's going to burst, it gets white in the middle and seems to just spread then, from the same spot, just like a spider web or something.. They look different depending on where they are on my body.

My symptoms are hard to tell, I have been on so much medication that I don't know what is from what anymore. I gained about 30 pounds at my heaviest and currently am about 20 pounds overweight. I'm always dizzy, tired, foggy headed, nauseous, vomiting, feeling confused (with the simplest of things), headaches, depressed, in general pain and that's all I can think of at the moment.

The hives went away for about 3 weeks in November with the Doxepin and Xyzal combo. The Prednisone only seemed to ruin my life may I add. I had to have my gallbladder removed (surgeon and primary doctor think that the gall stone/bladder attacks were brought on by Prednisone) in December. December is when they came back and have only gotten worse.

I guess what I'm looking for here after my sob story is maybe someone who has or is experiencing the same thing. I am desperate for answers. I can't live like this for much longer. If I had the money or the time off work I would try the Mayo Clinic, but it's not that simple for me. I am miserable and am looking for any kind of insight.

Any info or advise would be greatly greatly appreciated.
Feel free to ask any questions if you feel it will help produce an answer.
And I'm not sure what the protocol is for this site yet, but I will probably post this in a few different forums, so please also excuse the annoyance that may cause.
Thanks in advance for any help at all.

Ps. I also added pictures. I hope it's not too much.
Hopefully someone out there will be reminded of something they know of.














-Krystle

[tighnalocha]

I see this post is several years old, but have you had any changes since your post?  Do you take really hot showers or baths?  I'm having a histamine reaction that sounds exactly like yours, almost to the T with the description of the hives and it's ability to spread and take over your whole body.  I've determined that it is a massive release of histamine from a hot steam shower that I took 5 days ago.  There is no amount of pred/anti-histamine/Benadryl/calamine lotion that can slow down this progress.  I am concerned about the long-term effects therefore I am wondering how your hives have progressed.  I've read that pregnancy can 'cancel' the condition in some cases too.....

[MH89]

got hives? get ur thyroids checked!
that's what happened to me.

http://allergies.about.com/b/2007/10/02/got-hives-get-your-thyroid-checked.htm

[msosborne2u]

Hi There

My son is 14, will be 15 next month and has had hives, facial and lip swelling, joint pain.... fatigue... since July 14th, 2009...  

he has gained about 30 lbs since then and has been on prednisone, zysal, zyrtec, hydroxazine (sp?)..  he has been tested for many things...  only thing slightly unusual is a low C4 level....

He also has nystgmus and arm tremors, but the nuerologist does not think these are related....  

Your post was almost 1 year ago...  did you ever find out what it was?  Are you still suffereing?

- Jen

[Laura854]

I have the exact same thing as you describe.  I have been told it is idiopathic angioedema.  There are several types of angioedema. Check out www.haea.org.  The site can recommend doctors in your area who are familar with this.  or do a search on hereditary angioedema.  

The following are suggested lab tests to diagnose Hereditary Angioedema:  (from haea.org website)

Professor Zuraw recommends that patients suspected of having HAE should be initially screened by measuring complement C4 antigenic levels which are typically low even when the patient is not swelling, and in most cases low during a swelling attack.  
If the C4 level is decreased (or in cases where it is normal, but most or all of the clinical criteria listed above are met), C1 inhibitor antigenic and functional levels should be tested to confirm the HAE diagnosis.
Because the test for Cl inhibitor function used in the United States is insensitive and may not provide accurate information, in some cases it may be prudent to repeat the C4 and Cl inhibitor functional levels during an attack of angioedema.2

Hope this helps you.  I am still looking for something that will help me. I feel your pain!
Laura

[TJ422]

Have you been tested for the food allergies. My blood tests showed high IgE and ended up testing positive for nut and wheat allergies. A few days after getting off bread and pasta and peanuts - my hives were gone

[AJWS6]

Hi Krystle,
Sorry your not getting any answers or proper treatment.  I never had hives, but would like to share a story.  

Years ago, I developed a real bad rash, all over my back, all over my body, went to the doctors, they had no answers, and kept getting prescribed all types of creams, that didn't help.  For weeks, I was suffering and scratching up a storm.  

Well to make a long story short, changing clothes detergent soap, caused the unexplainable rash.

Hope someone at the forums has an answer or suggestion for you.  Hope you feel better.  Good luck !