Had to be on a constant high doses of prednisone and 4 Zyrtec a day plus a class 2 antihistamine
Hi I’m very new to the group but not new to having chronic hives. ☹️
Anyone else feel they have hives because someone else in the family did? My mom at 28 just had my middle sister and two months later her mom died. Immediately and then for the next 5 years my mom suffered from chronic hives that would randomly appear on and off with different things. I know from my experience that sometimes it was citric acids in the foods she ate, wines, or caffeine that triggered hers…but not always.
Fast forward to when I’m 27, three months away from turning 28 and I start breaking out in hives after eating fish from Captain D’s. We assume it’s a fish allergy but 6 weeks later going strong we were wrong. I had to be on a constant high doses of prednisone and 4 Zyrtec a day plus a class 2 antihistamine in the form of a stomach acid pill and I’m still breaking out so bad that at least once a week I had to get an emergency dose of steroids in an IV. My eyes would swell shut and I always looked like a professional boxer took practice swings at me.
I opened the oven door once forgetting I was to avoid heat and the heat wave hit my face and my throat and my lungs and I could feel the hives take over inside and out and then had to drive to the hospital slowly losing vision because my eyelids were swelling up so much I couldn’t open them.
It hasn’t been 5 years for me like my mother’s was but we are now in year 3. I’m hoping mine disappears like my mother’s did (and she has had 0 hives since her weird outbreak phase) but I have/had it way worse than she did.
I currently am on a asthma shot called Xolair that also helps chronic urticaria sufferers, (please don’t tell me anything bad or side effects of it because I’m NOT kidding it has saved my entire life, social, family, my relationship between me and my spouse!)
I was so depressed and couldn’t live life and was always covered in hives and just three days after that first shot I didn’t have one spot! It is a miracle drug and I sometimes forget how bad I used to have it until it gets close to getting another shot and I start getting hives on my legs again, but they are considered “pin prick” hives and aren’t near as bad as the giant welt like hives that used to engulf my body.
I swear my hives were hormonal because when that time of the month came around I would break out more. Doctors swore it can’t be related to hormones and I want to smack them for saying that when they have no clue what causes it. I had ovary/cysts problems for two years leading up to when my hives started and recently had to have an ovary and Fallopian tube removed due to pain/complications. I want to say they were linked in some way because that surgery happened in November 2018 and since then I have reduced my meds on my own! I get the Xolair monthly and only have to take 2 Zyrtec a day and no more class 2 antihistamines. Before my surgery I had to take 4 Zyrtec a day plus two class two antihistamines (cimetidine) or I’d be itching and horrible if I missed one dose plus sometimes I had to take an anti itch pill! That’s a lot of meds! And now I’m taking less than half of what I was before!
My only trigger now is wine. Reds especially but I can’t take a tiny sip of any variety without turning red in the face and itching all over like bugs are crawling under my skin. I mean I can live without but it sucks that I have to permanently give something up because of this crap.
Sorry this is so long. I’ve always felt so alone and that no one could ever relate (My mom could some but even the intensity of my condition scared her). I know my allergist said there were thousands of people suffering from this but you never see them and you never hear about their stories so you feel like it’s just something they say to make you feel better. This chronic urticaria sucks so bad and I really wish the answer to “is there a cure?” Wasn’t “there is no scientific explanation of what causes it. We can run tests to see if it’s another disease related type of hive, otherwise all we can say is you have it and we don’t know why.”
So glad this group is here and can’t wait to read more about others’ journeys with this condition!