Chronic Idiopathic Urticaria and it's not improving

Hello & welcome to Healing Well. The archives here are full of different stories of people with this same condition. By using the Google Search feature here, I found numerous old posts from people that figured out what was causing the problem. It was certain foods they were eating. They started keeping a food journal of everything they ate & were able to figure out what foods was the trigger.

It may sound a little far fetched to you, but it does have some value. Not everyone has the same tolerance for food. An example is the people that have to go gluten free. My neighbor's daughter was having issues with horrible hives on various parts of her body. She showed me a picture of the girls back, it was terrible. Turns out she is celiac. As long as she stays gluten free she is hive free. If you will look in the Celiac forum, there is a member that has posted there about the correct celiac testing that should be done. If you have trouble finding it, let me know, I will try to help.

I hope you can get some help.

I have had them for 9 mos., terrible at night. Xyzal and Pepcid AC will knock em down pretty good.

Hello,
I have hives since 7 months ago. Still don't know what caused it and still trying to figure out the cure. I have done lots of reading through forum like this to see what works for other people. I have read some people who said vitamin B12 help them. Some said water therapy help them because apparently chronic dehydration could cause hives. Some got cured by taking nettle pill or nettle tea.

For myself I have tried vitamin B12, quercetin, evening primrose oil, nettle pill and apple cider vinegar. I have not found a complete cure yet.

For me I believe stress aggravated hives and mine could be caused by leaky gut. I include a link to an article about leaky gut.
https://www.liverdoctor.com/8-signs-may-leaky-gut

When I first got hives I was in lots of stress so I was depending on cetirizine 10 mg once a day. It worked for me but after 2 weeks I started to have pain - almost like severe heartburn. Which later on I found out due to cetirizine. So I started to look for other alternatives. Have not found one as effective as cetirizine but right now I could go on without antihistamine for a couple of days. Most of my hives now got worse at night time.

I found out that I couldn't take apple cider vinegar orally. Even with food it gives my tummy discomfort. But rubbing apple cider vinegar on the hives directly reduces the itch a lot faster than taking antihistamine.

In response to your question. No, vit B12 was not effective for me. I have been taking B12 prior to getting hives but only 5000 mcg dosage every 2 weeks. After I read that comment about getting relief from vitamin B12, I upped the dosage to 30,000 mcg daily for up to 2 weeks. But it didn't give me any relief.

I also have stopped taking dairy, egg and wheat (for the most part). Eating fresh fruits, veggies and lean meat ( try to avoid processed meat).

I kept a food diary documenting what food I eat and also supplement and medication I eat every day. I also document how my hives is behaving that day. Whether it was a good or bad day. The diary sort of help me find out a few things that I need to avoid mainly some sauces like oyster sauce (usually used in Chinese stir fry). It also helps tracking my supplement since I'm taking quite a few supplement now.

I have come across on the internet people saying vit D helped with angioedema. I even came across this article about vitamin D helped hives.
https://www.unmc.edu/news.cfm?match=12374

I have tried vitamin D supplement but only at 2000 IU level for 2 months. Haven't got tested for vitamin D so not sure if I'm deficient or not. But didn't really see any dramatic result either.

But in general compared to 4 months ago I don't have to depend so much on antihistamine as much. I used to take cetirizine (the only thing that worked) every day. Now I can get by without antihistamine as long as I watch what I eat. Every so often I do get bad hives that's when I take benadryl which normally helps though it makes me drowsy.

I'm glad that we are able to exchange information like this. Hopefully we both can get some benefit out of this.

I have read quite a few people do think that hives are worsened by emotional state, eg. stress. And a lot of resources do suggest doing exercise to release stress. I try to go out and walk at least 30 minutes a day. I think when I exercise my body got tired and sleep better at night. It helps to fall asleep faster. That's my reasoning so I keep doing my walking every day.

After I posted my message yesterday I started to think that I am possibly low in vitamin D as well. I went through my files yesterday and found that I got the vitamin D level tested back in 2015 and was low then. My doctor prescribed high dosage of vitamin D for 2 months I think. Since then to 2018 my diet has been 75% vegetarian which didn't help with building vitamin D in my body. And I don't think I get too much sun either.

So I went out and bought some vitamin D and I will start 5000IU for at least 2 weeks to see if there's any noticeable result. Will let you know.

This just caught my eye. you may consider seeing a biological dds and checking the wisdom tooth space for cavitations and/or infection.

Has anyone mentioned the drug Xolair to you? It is a biologic injection that has been approved for both asthma and CIU. I take it for asthma, and it has helped me tremendously. My allergist is the one who prescribed it for me, and I believe allergists are also pretty skilled in treating CIU due to the immune system involvement.

Xolair has not only helped manage my asthma, it has moderated my response to my allergy shots enough that I have been able to make it up to a maintenance dose. Before, I had such huge reactions that I had to stay at a low dose.

In addition to Xolair, there are other biologics that are being used/developed for allergic diseases, including urticaria. It might be worth seeing an allergist or talking to your dermatologist about. Xolair has been a lifesaver for me.


This is the drug website: https://www.xolair.com/ciu.html Or you can google "Xolair"

Sorry, got distracted and forgot to tell you about my CBC. I had a CBC done maybe about more than a month into my hives started time. I checked my eosinophil number and it was still in the normal range. I remembered my doctor told me that all results were good and there was nothing concerning. Other than my hives, obviously.

My primary doctor ( I lived in US, then) referred me to an allergist. But she warned me that to run any tests I had to be off antihistamine for 48 hours. At that time it's not possible for me to do that. And then I got so many things to do since we were in the midst of relocating to Canada. That's the main cause of my stress.

I have taken vitamin D (5000 iu) for almost one week now. My hives seemed to be better, I guess. In the scale of 1-10, maybe around 2-3. But then I had an outbreak in the evening and I still tried to go to bed without antihistamine. In the end I gave up and had to take one pill.

But I also managed to do some searches and found out that hives especially chronic spontaneous urticaria could be affected by hormonal imbalance in the period cycle. If I looked back it sort of explained why certain times I got outbreak even when I was only consuming pretty safe food.

@Element8 Sorry for disappearing for a while. I hope you are getting better. I just came back from a trip to Asia. I was hoping that the hot humid weather there could help me cure my hives. As I read in some other forum before that sweat therapy could help cure hives. Or one person claimed that the hives didn't bother him when he was in Thailand but came back as soon as he returned to his country. But either way it didn't help me.

Before I left I promised I would update you on the result of vitamin D therapy. Unfortunately vit D didn't really give any out of ordinary result for me.