My Hive story
Hi everyone! I’m new! Here’s my story;
Its started when i was in high school, suddenly overnight showed up (hives EVERYWHERE, Swollen eyes and lips) lasted EVERYDAY for about a year and a half. I was on prednisone and many other meds. Nothing worked, blood test showed nothing, they even cut a hive out of my skin for testing. A year and a half later, one day I woke up and it was slowly disappeared (YAY!) and it did for a while, until 4 years ago (2014-2015) It came back randomly! Same thing again, lasted about a year and a bit. Went on prednisone again for a long time along with various meds for allergies. Waking up everyday covered head to toe in hives and swollen eyes and lips. Usually disappeared by 2pm and started to flare up around 6pm again. The allergist at that time told me it was stress, and did nothing. Then, randomly disappeared one day. Four years later here we are again, Waking up to swollen lips and eyes and hives everywhere. so far its been 3 months. Ive been taking over the counter allergy meds as i’m sick of the way prednisone made me feel and made me look. Its scary for me to have it randomly appear and come back YEARS later. Its like I am walking on egg shells every year hoping it doesn’t come back. I have tried everything, changing my diet, laundry soap (any personal items as-well) etc. I’m curious if anyone else has experienced this, with it disappearing and coming back years later ? Have you had any experience with diffrent meds? (Im in canada), Have you found out what your problem was?
I have gone years without problems then they will pop up again. Mine are similar to yours, they will flare up really bad every evening about 5-6pm but not so bad during the day.
Lisa Graham Soldati
Sounds similar to me. Mine come every four years and stay for 2 full years. I’m 53 and this is my 5th time with them. I respond to nothing but prednisone and Dapsone. I’m usually covered head to toe daily. I’ve taken every drug, been tested for everything and can’t figure out anything but stress which triggers them. It’s hell.
Lisa Graham Soldati Yes! usually the hives stick around for the most part but the itching stops. Prednisone did not work for me 😞 Stress, alcohol and acidic things are triggers
Jenny Knight Brakhage
Yes, had them 4 years ago, like from May to Dec and then they went away. Had the nose, tongue, lip eye, swelling sometimes.. Was taking antihistamines and seeing a derm, made an appt to see allergist and it took a while to get in, when I got to see him, hives gone.. He told me he would have recommended more Zrytec (basically). Then 3 years latter in April 2018, they came back. Have been on antihistamines out the whazoo and Xolair. Haven’t been on Xolair awhile, bottom line, it’s been 14 Mos and they are more controlled. Thought they where going away in late April, but they did not.
Jenny Knight Brakhage Here’s to hoping they go away soon ♥️
I am on my 3rd round of hives. Started about 7 years ago. They show up everyday for a year and a half and disappear for about 2 years.
Mine came back after 30 years!! They told me it was food allergies 30 years ago. They showed up 2 years ago and my allergist said they know so much more now. It’s an autoimmune called CIU. It goes dormant and then can come back. I took Zyrtec in the morning and at night and stayed away from high histamine foods and alcohol.
Carla Kunstel And how well has your body reacted to zyrtec? I hate the side effects of medications…. but sometimes you have no choice 😞
It does very well. Actually my hives went away!! I was given a “diagnostic cortisone shot” into the hip bone for a hip issue. My hives have not returned in a year and a half!!! Who knew??? I still take 1 Zyrtec a day to keep histamine in my system should the hives come back.
This sounds similar to my story! They started when I was 10yrs old though. I would have them for 6+ months straight and then they would disappear for a couple years or so and then come back. Eventually they started coming back sooner and sooner and even started to make my throat swell. I went to doctor after doctor who told that they wasn’t anything they could do. I would just get prescribed Prednisone and some allergy medicine. I took a chance and went to a naturopath that tested my thyroid (full thyroid panel) and it turns out that I have Hashimoto’s Disease. Since I started treating that with diet, natural dessicated thyroid hormone, and supplements, my hives have been gone and have not returned for over a year!
Liz Loane wow! That’s an incredible journey! and I am happy for you
What tests have you done? How’s your thyroid?
Michelle Manovich Dr. did not want to do any tests before (last year) and allergist claimed it was stress, so i said eff it, and waited a month and one day it just went. Now its back so im questioning my next steps. Im thinking a homeopathic dr , just worried about money
Kayla Hanak does insurance pay for a homeopathic doctor?
Marcie Adamson Unfortunatly not in BC or at least not with my care plan
Marcie Adamson to a point, no meds or tests but Dr. Time yes.
Kayla Hanak I doubt it does here in the US either
Hi there, CIU patient for almost 1 year here. My thyroid was fine. Allergist initially put me on 2 zyrtec twice daily. Then added Singulair in the evening. Hives increased in frequency and intensity. So I got a referral to dermatology and they did a punch biopsy. Pathology confirmed CIU and I went on Sulfasalazine (immunomodulator). Side effects were rough initially but I’ve figured out what works for me. I still get a handful of hives daily, but they are so much more manageable. Occasionally I’m blessed with a hive-free day. 🙏✌❤
Johnna Fay Ugh! Glad to hear there is hope out there! What were your aide affects or the most common ones for the drug? I hate prednisone and the “moon face” I get….
Kayla Hanak nausea, diarrhea, night sweats, nightmares/vivid dreams, headaches. I also take hydroxyzine at night before I sleep. My hives were worst at night (or ya’know 2-3am ughhh). So my immunologist gave me a suite of options to help with rest. My allergist actually suffers from CU himself and can relate to our pain!
Johnna Fay Ugh I hate side effects. I usually put up with it for as long as I can without prescriptions because of the side effects
That’s pretty similar to my story as well!
Katherine Stokes Mann
I am 61 yrs old. I got hives when I was 18 yrs old (1976) back then it was basically unheard of. No one knew what to do. At the time I was also diagnosed with hypothyroid. My thyroid was so out of control I only weighed 98 lbs. I had hives the entire time I was hypothyroid that would I hope all of you are ready and I suffered from giant hives that would cover my entire body and bruise my skin so bad that It was beyond recognition. I also carried a epi pen and made numerous trips to the ER. tons of tests NO RESULTS! NO ONE KNEW WHAT TO DO!!! Back then NO ONE HAD A CLUE how to handle hives. my time period for hives was from 1976-2000. Every year something new. BUT when my thyroid leveled out IT STOPPED! Trust me THYROID has a lot to do with it also. Normal levels are not normal levels. I finally found a allergist that saved my life back then that gave me the right “cocktail combo” and I’m not going to tell you I didn’t experiment on my own with different combinations along with zantac. But I also think that thyroid meds need to be involved also. AND hives are hereditary!!! SO if you’ve had a family member that’s had them or you’ve had then a family member will get them. I’ve had 2 nephews that have gotten them and I now a grandson. I have found that as long as my thyroid is under control so are my hives. Because thyroid ATTACKS your immune system. Hope this helps anybody try another direction!!!
Katherine, you should edit your post, you have a lot of personal info posted about cable bill(?). You can edit and delete everything except for the hives post. Just trying to be helpful here not condescending..
Katherine Stokes Mann do edit your info pls
My hives are sporadic..but always in the same pattern around my face..hairline…back..
Always appear when very stressed…go away with antihistamines…
Mine do the same thing. I will out of the blue get them and the face and lip swelling. It lasts for a year to a year and a half and then it disappears for a couple of years and then out of the blue comes back again. I have been told it is autoimmune related. I haven’t got much relief from anything including xolair. Nothing helps the itching or pain and nothing makes them go away. I wish I had more answers as well.
Lori Bonnell Pedersen
My symptoms were few and far between at first, just swelling no hives. I have never had anything last for more than a day or so and then it went away. I take plaquinel, you should ask for a months supply just to see if it works for you. I take 200 mg once a day but my prescription is for twice a day and that is what I had to take until I got it under control. I took it at 6 and 6. If I was late by a half hour the hives would be right back. I have been hive free for over 10 years!!
Hi Kayla, I have had this for 32 years and it happens just as you described. I have hives and angioedema for 3-4 years then will go into remission for 3-5 years to only have them return. I am back out of remission right now and starting with a new allergist next month. I have gained over 20 pounds from the prednisone and am hoping to find something that works that will get me off of the prednisone. I am so sorry you are going though this and hopefully you will not have the same experience that I have had. There have been medical advances like Xolair and other medications since this first started for me and I am hoping to start one of them soon myself!
( Chronic ) Urticaria ,,means forever disease ,,may be absent for days ,moths years but to be sure ,,come-backing again,,,
Amy Timmer Johnson
I have similar story. Each flare or bout of hives comes and lasts for months or years and goes away. My last time without them was the longest but they came back worse. My allergist/ immunologist said sometimes in people they can come back worse as time goes on. I’m on a lot of medicine including Xolair now and am doing ok but wish we all had more answers to this. It’s a miserable thing to have.