Does anyone else struggle to believe that their hives are idiopathic?

I had a bad hive flare up

Does anyone else struggle to believe that their hives are idiopathic? I’ve had Chronic Idiopathic Urticaria for Four years now and whilst I’ve been told numerous times that hives that last more than 6 months have no known cause or trigger, I just find their sudden arrival not to be spontaneous. For instance, before I went on holiday two weeks ago I had a bad hive flare up. The day we left my hives cleared up quickly and I didn’t have one flare up whilst we were away for two weeks. The day we got back, my hives came back with a vengeance and the day after that they went again. Three days later I woke up covered head to toe. What I’d give to just find out why. I try to be so strong but sometimes can’t help shedding a few tears when I’m applying cream to the hives on my face


Discussion


Amanda Bothma
Did anything happen while on holiday, in terms of stress, rushing, argument, distress, worry of any kind? Did you take work with you or did you have to deal with anything work related (if employed) ?
Did any of the above happen within the first three days you got back home?

Julie Noe
Its easy for the medical profession to just say “we don’t know why” because the treatment is the same. So it is of little benefit to them to dig. After 8 yrs I have an answer. Tested positive on the CU index so I have autoantibodies that attack mast cells. Have they checked you for this? To rule in/out an autoimmune cause my allergist ran:


Julie Noe
Becky Edwards although mine are autoimmune I have very specific triggers (water, harsh detergents). So it is entirely possible something triggers yours. With CAU no one knows why some people have hives 24/7, some have triggers and others have episodic flares. It is truly frustrating.

Daphne Corbett
Julie Noe I also tested positive on the CU index. What drugs/ treatment is effective for you and do you have other autoimmune diseases? I have Celiac and vitiligo.

Julie Noe
Daphne Corbett I have until recently been really lucky that only hot baths and wearing clothes washed in certain detergents set mine off. Was able to avoid triggers and take zyrtec with good results. Then had rotator cuff surgery with permanent hardware left in. Over the past year I have had really odd sensations in my shoulder and when I got referred for deep tissue massage my hives hit like a sledge hammer. So hives nearly daily now for 3 months. Taking montelukast, zyrtec and benadryl with little improvement. Allergist wants me on xolair which I would prefer not to do. Really just want this hardware out but can’t convince the surgeon.😥
I also have primary Reynauds. No other autoimmune illnesses…yet. Are meds working for you?

Daphne Corbett
I have been taking Ketotifen (compounded) for 5 months and it has helped but I think I need more options. I get crazy swelling in my face and red burning swelling in hands and feet. I just wonder if it’s more than CAU

Julie Noe
Daphne Corbett I have not had issues with any sort of swelling like angioedema. I know it can go along with hives but other things could cause it also. And Celiac disease probably complicates things quite a bit. Sorry you are having so much trouble.

Liliana Martinho
I know why I get mine but there is still no way to get rid of them even knowing what causes them 🙁 I’ve had them for 16 years now. I’m extremely allergic to both heat and cold, really high and low temps can actually kill me, so i always have to keep epi-pens on me at all times. Xolair does help a bit with the cold ones and I just started on Blexten for the heat ones since regular allergy pills stopped working. I also get pressure hives when I get hot which is a new type i’ve gotten in the last couple of years lol They checked for Mast Cell Activation Syndrome and Mastocytosis but those came back negative

Beverly Adams Henry
Liliana Martinho, One of my many triggers is cold water. I can’t be in cold water, so I no longer go swimming… ect. If I’m going somewhere extremely cold or near cold water where someone can splash on me, I take a Benadryl before I get there as an extra precaution and have my epipen with me.

Liliana Martinho
Beverly Adams Henry Cold water does give me hives and freezing water can cause my heart to stop but since I also have cryofibrinogenemia, temps below 4 degrees Celsius will cause my blood to thicken and can lead to blood clots and strokes.

Christina Tarpley
THIS!!! A thousand times THIS 👏🏼👏🏼 Idiopathic means they don’t know what’s causing it, not that there is no cause. Sometimes I just sit and stare at the huge welts on my arms or legs and think: is it the red coloring in the Gatorade? When was the last time I washed my sheets? Maybe I should go on a fast? Do I have an infection I don’t know about? I literally drive myself crazy thinking about these things. But it leads me to do a lot of research and I’ve found that more and more they are reclassifying people from CIU to AU (autoimmune urticaria). Your body basically tricks your IgE’s into thinking there’s an allergen when there’s not. There is a test you can have done called an ASST to confirm. I’m going to ask my allergist for this test at my next appointment. I HAVE to know the answer. I cannot settle for “I guess we’ll never know 🤷🏼‍♀️”

Elise Rappoport
Current clinical view is that it’s all autoimmune but spectrum like, with those of us who present with classic autoimmune patterns at one end and less predictable ‘idiopathic’ at the other. The test for autoimmune urticaria only tests for one type of urticaria and you can get false negatives. None of the things that bring me out of remission are random – i can track the time bomb back to the moment the switch tripped and the triggers are always one of 3 or 4 things (high stress, high hist foods, hormones and food sensitivities, viral/bacterial infections). The things that make me flare when my CU is active are the same. Honestly, I think it took me 6-years to really get my head around the drugs, triggers and identify patterns. Such a learning curve And I’m still learning 13yrs in thanks to this group. Big hug to you, hope tomorrow is a better day.

Petrie Gillian
I was told mine were idiopathic. Now I found out it’s a food intolerance.

Petrie Gillian
I mean my consultant found out.

Abbi Joubert
Petrie Gillian same with me. Although I figured this out on my own. After 10 “specialists”.

Joe Nimon
Petrie Gillian intolerance to all food in general or specific foods?

Petrie Gillian

Joe Nimon saliscyates, food with it in it which is most vegetables and plants, toiletries, cleaning products and it’s in medications too. Always been allergic to aspirin which is made from salicylic acid. Causes asthma, mouth ulcers, nose bleeds, urticaria, angiodema and throat swelling for me.

Olesea Popa
All of the above plus food, especially those high in histamine and quality check…I’ve had ICU for 2 years, no break.. everyday meds(prednisone and others). When I radically changed my life style: stress free, strict diet..I am meds free for more than a year. And now, that I am better, I introduce slightly food back into my diet – quality is 100% important. I consider myself a lucky one, and hope this would work for everyone- because doctors are not able to help, all I got from them were medications NO ANSWERS

Catherine France Highfill
I don’t believe anything environmental is causing my hives. Mine started when I was living in Arizona. They continued with a vengeance in Germany. And they never let up while I was living in Iowa, Florida, Virginia, Texas, New York, Georgia or California. I’ve lived in everything from a 100+ year old house to new construction, with carpeting and without. With furnaces that were electric, gas or oil burning. Plus the climate was very different in all the places I’ve lived. I think I can safely say, in my case anyway, that there is nothing in the environment causing me to break out.

Kimberli Vann
I’ve had them for over 25 yrs. I went into remission for almost 20 yrs and now steady 1.5 yrs.

Janet Cesario Perry
I believe that all our hives have a cause. I know many of mine after playing detective. Some are allergies even thought the docs said they weren’t our horrid spring yellow pollen season creates the “perfect storm” for my hives. It is an ongoing process, but plan on beating it. I am on modified AIP diet and trying to keep sleuthing for triggers.

Erin McCurdy
Idiopathic just means they haven’t found the cause! I don’t buy no cause. Have you looked into environmental possibilities like mold in your home or work? Just wondering since you didn’t have issues while away

Beverly Adams Henry
I honestly believe when doctors say there is no trigger or no cure, there plain lazy. There is always a cause for hives. Always! Our skin is our largest organ. It will tell us when something is wrong. Yes, it’s true that most of us here have an over reactive immune system. Many of us have autoimmune diseases. But there is a reason your body is attacking itself. It has identified something as harmful, even though it may not be harmful to others. The hard thing is finding those triggers. I have hundreds of triggers! But I have identified most of them. Removing these triggers from my life has given me my skin back and my quality of life. I do have to take meds daily but it is worth it being hive free! If I come in to contact with any of my triggers I will have a flare up still. It could be instantly, with in a day or two, or even a week later! It all depends on the trigger. After years and years of not knowing or understanding, I’m glad I’ve figured some of it out!

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