So incredibly sick and tired of CU!!!!

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New Member

Date Joined Jul 2008
Total Posts : 2
   Posted 7/15/2008 2:39 AM (GMT -6)   
Hello everyone,
I started having chronic hives with bouts of angioedema at the end of Feb. this year. It has been about the worst six months of my life trying to figure out what is causing the hives and swelling. I've been on seriously every antihistamine available in combination with H2 blockers and Prednisone with absolutely nothing helping but the Prednisone. However now I am having too many side effects from the steroids! UUGGGGGGGGHHHHHHHHH!!!!!!!!!!! I have had testing for Lupus, RA, Mono, all being neg. Also IgE was neg and c4 and c3 were within normal limits. My TSH level was 9.5 and thyroid antibodies 37 so my Synthroid was increased. At that time my allergist thought all the symptoms were stemming from the thyroid imbalance, I thought.....FINALLY!!! But as my TSH level returned to normal and after my long drawn out Prednisone taper was complete....back came my hives! They almost seemed worse than ever, covering every inch of my body and they seemed to be "deeper" under the skin if that makes sence to anyone. My facial swelling (lips eyes chin cheeks) also began to appear more frequently and with it I get a severe sore throat and hoarseness in my voice. When this occurs I end up in the ER getting injections of Solu-medrol and epi. I kept a food diary for a month. My allergist told me that is most likely not a food allergy, or an environmental allergy because of the frequency of my symptoms and after keeping the diary nothing linked with the intensity of my symptoms.
I have run out of ideas, and quite frankly am ready to say _ _ _ _ it!! CU has consumed my life in every way making it impossible to function at work or take care of my family. I feel like such a burden on my husband and kids, and just don't know where to turn next. I know that 90% of CU is idiopathic, but I just can't help but think this is my bodies way of telling me that "something is wrong"!! I see my allergist on Wed. Not sure what the next step will be....still haven't had scratch testing because I can't get off the antihistamines and steroids long enough for accurate results!!!  OMG!!! What a catch 22!!
OKay...I will shut up now! Just a relief to be able to let all this out to someone who knows what I am talking about!
Does anyone have similar symptoms/labs or any ideas?  I am open to anything!! 
Thanks for listening,
GERD, depression, anxiety, hypothyroidism

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 7/15/2008 3:42 AM (GMT -6)   
Has anyone tested you for Mastocytosis? Gastrcrom is the primary medication used to treat it ~ it's a mast cell stabilizer, so it basically prevents antibodies from activating the allergic response.

And have you been worked up for CMV, EBV, HSV, etc.? Sometimes, systemic viral infections can cause chronic hives/angioedema.

Also, if the doctor is willing to draw blood and do the allergy tests that way (i.e., by measuring IgE responses to specific test substances), then you may be able to get tested without having to go off the anti-allergy medications. My husband has been on steroids for a long time for his food allergies, and his RAST blood tests always show plenty of reactivity against the foods he is allergic to, so I know the blood test method can be an alternative to skin prick/scratch tests.

I hope this helps - take care,
Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, T- & B-Cell Lymphopenia, malabsorption/malnutrition, Lyme Disease (Igenex Lab IgM WesternBlot positive/CDC negative), etc.; Currently TPN-dependent.
Meds:  Pulmicort, Zofran, Scopalamine Patch, Injectable Vitamin B12, Heparin (to flush PICC line).

New Member

Date Joined Jul 2008
Total Posts : 2
   Posted 7/15/2008 8:41 AM (GMT -6)   
Thank you so much for your input! Great ideas! I am going to ask about the labs at my appt. tomorrow. Can I ask how long your husband has been on steroids and what doseage? Just curious as I have been a high dose for nearly 6 months now.
Thanks again!

New Member

Date Joined Jul 2008
Total Posts : 3
   Posted 7/15/2008 10:39 AM (GMT -6)   
Get tested for Latex allergy. They can draw blood (RAST) You would be very suprised at the exposure to latex. Tires, Mouse Pads, a lot of things. Each of the symptoms you described can be anaphalaxis. Oh boy do I understand the itching and swelling.

Regular Member

Date Joined Jul 2008
Total Posts : 25
   Posted 7/17/2008 8:47 AM (GMT -6)   
a friend of mine has a latex allergy, it is surprising how much you come in contact with it. He found out when he put a Halloween mask on. Definitely get tested for it

New Member

Date Joined Jul 2008
Total Posts : 3
   Posted 7/17/2008 12:12 PM (GMT -6)   
Oh yes
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