I am suffering of chronic idiopathic urticaria from 17 year

Hello everyone! a 17-year sufferer of chronic idiopathic urticaria. I’ve undergone stress & allergy tests, with no rhyme or reason to this affliction. 10mg of Zyrtec (or similar) daily usually manages my hives, and I was blessed in the month before and three months after my daughter was born last October to be hive and medication free. Hives flare up uncontrollably when I am sick- be it chest, cold, fever, stomach, etc.. After an extremely painful two days of full body hives and swollen face, I thought I’d finally take a chance on reaching out to others like myself who have long term experience, or possibly some that have found better solutions. Here is a photo of me swollen-faced yesterday (not my best view), but you don’t see the vibrant red patches all down my arms, legs, and torso. Thanks in advance!


Wendi Lee 13 years for me with a couple of remissions. Then they come back. Have them now and debating options

Sarah Cimino Wendi, is there anything that seems to make them worse? Or any common factor for your remissions?

Beatriz Al-Saigh Have u tried zaditor eye drops? Been tested for Mastocytosis? Tried nasal sprays? Tried Zantac or Pepcid? Motrin 325mg twice a day? Singulair 10mg? I know these meds sound unrelated or unhelpful but when used in combination they are effective for some because the address H1 and H2 histamines and mast cells!

Sarah Cimino Hi Beatriz. No, I’ve never used that combination are really any of those medications individually. I want to be hive-free, but I want to take as little medication as possible. 10mg of OTC anti-histamines usually manage me, but I’ve had hives daily for about a month now. The worst was what you see in the photo above, but I have them all over my body right now. Luckily not my face.

Beatriz Al-Saigh I am the wrong person to ask because I believe in meds especially when u are this bad off! I only believe in the meds that have few side effects And are not addictive! Who treats u for this?

Sarah Cimino I haven’t been to a doctor specifically for my hives since 2007. I saw a variety of dermatologists and allergists in NE Ohio and NYC over a ten year period. No allergies or cause for my hives could be determined, so I was given the diagnosis of “idiopathic” and a prescription to treat. Once Zyrtec became OTC, I saved myself the time/cost and discontinued seeing doctors that didn’t seem to understand. I had a GYN run some thyroid testing back in 2012, with no results. She also recommended a stress saliva test, but around that same time, I went through about three months of “trauma-induced” anxiety and depression brought on by someone threatening/harassing my family. I was hive-free through all of that, so I don’t think stress is a factor. I’m hoping to find some suggestions through this group. I also want to start looking into seeing a specialist again, but don’t want to waste my time with indifferent doctors.

Beatriz Al-Saigh Please go see an allergist/immunologist that specializes in Mastocytosis or Mast Cell Disease! I hardly have allergies that are detected by prick testing or blood work but my hives are not caused by those 3-4 things I am allergic to! There is a medicine regimine that helps a lot to at least minimize or control it if it doesn’t stop it! The right drs do help but by all means this does not mean the Mayo clinic like a lot of people think! There appears to be a link with when u get sick trust that gut and keep searching for answers because the limitations and lack of info is what keeps us suffering! I have health problems that developed after the CIU and PMLE, and drs don’t link them together but I know all my health oddities are somehow related! If I had not trusted my gut and pursued different drs, I would have suffered longer with untreated Dysautonomia/POTS and people would have just thought I was crazy making up all my symptoms! Some drs don’t know enough but others who do are out there! We also think we know it all but we don’t! So don’t assume that just because u don’t have allergies that your situation can’t be helped! Idiopathic just means the drs u went to can’t clearly specify why u get them but a lot of medicines treat the reaction in the same way regardless of the cause! The cause just helps if there is an underlying disease playing a role that needs treatment! So don’t let Idiopathic stop u from seeking answers but surely investigate which drs are worth seeing!

Beatriz Al-Saigh U should join a mastocytosis support group and put your post up and see what they say! Wishing u the best!

Sue Elshire Hargrave Oh, I know this look….this happens to me, too. I am so sorry. Not only do you feel odd about the mouth area, but you look in the mirror and you don’t recognize yourself. Hugs!!

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