Avoiding Misinformation about Chronic Hives

"One of the first things I did when I found out I have chronic hives was search for support groups online. Unsurprisingly, they were not hard to find and there are many different groups to join. I think there are pros and cons to joining support groups online, although I propose that there are more cons than pros. The pro is that you don’t feel so alone with what you are going through, which is important with any kind of chronic illness, but more so with rare conditions.

However, the drawbacks are things like misinformation, abundant complaining/negativity, and one-upping each other on who has it worse off. While there is good information that can be gleaned from these types of groups, more often than not, information is either completely incorrect or missing crucial details. To that end, I would like to try to address some of the misinformation I’ve seen floating around these groups lately.

There is no cure for Chronic Hives

While there are many kinds of chronic hives, the term “Chronic Spontaneous Urticaria” or CSU, refers to hives that are caused by an autoimmune disorder. An auto-immune condition is not something that can be fixed. The symptoms can be controlled, and thankfully for CSU, it’s possible to go into remission, but there is no cure for it.

I see many people posting comments about “getting to the bottom” of what’s causing their hives, or sharing some miracle potion they found that got rid of their hives and suggest that other people should try the same to get rid of their hives. I can’t tell you how much I wish there was a cure, but there just isn’t. I see people comment that they feel like antihistamines and biological medicines are just bandaids. And they are, to some extent, but that’s how autoimmune hives have to be treated— by controlling the symptoms.

Type 1 diabetes is another example of an autoimmune condition where the body attacks the pancreas and the pancreas stops producing insulin. Unfortunately, there is no cure for diabetes. It is what it is and you have to learn to live with it. Insulin is the treatment. I would no more consider insulin a bandaid than I would antihistamines for CSU. I just hate to see people chasing answers when there isn’t one to be had. Different types of chronic hives are not caused by an autoimmune condition, and the root cause definitely needs to be looked into, but sometimes you have to be content with just a "bandaid"`.

The cycle of remission

As I mentioned earlier, hives have the potential to go into remission. Hives can leave just as quickly as they come and with no explanation whatsoever. But I think there is a tendency for people to credit a small change they made in curing their hives. For those with autoimmune hives, I think it’s just a coincidence that whatever change was made coincided with their hives going into remission.

Maybe I sound cynical, and perhaps I am, but what happens when the hives return while that change is still being implemented? I’m afraid that falsely attributing a change can lead to significant disappointment when the hives come back, and then the mad dash to figure out the “cause” begins again. It’s a vicious cycle that I hate to see people go through, but I’ve seen it time and again. My word of caution is to be careful what you contribute your remission to. Maybe it is due to some change or supplement you added, but that’s not going to be true for everyone.

The good and the bad of steroids for Chronic Hives

Lastly, I want to talk about steroids. Steroids are both good and bad. They can bring swift relief but usually come with terrible side effects. I just saw a post from someone upset because their doctor wouldn’t prescribe steroids for their hives. As hard of a pill that is to swallow (literally, steroids taste horrible!), I am going to side with the doctor on that one.

Steroids are great for a severe or acute flair, but long term they are going to lead to more hives than before. Steroids tend to have a rebound effect with hives. They get rid of them in the short term, but as soon as you get off the steroids, the hives return with a vengeance. I’m not 100% sure how or why that happens, but it does. If you want to talk about bandaids, steroids are the biggest one you can get for chronic hives. My non-professional advice— avoid steroids like the plague.

Helping filter bad information

I know my articles are usually pretty upbeat with quite a bit of humor sprinkled in, but I felt like I needed to address these issues, perhaps more for myself than anyone else. I just hate to see people struggling unnecessarily, especially from all of the bad information floating around online.

Did you find any of these misconceptions enlightening? Do you have others you would like to share? Let us know in the comments."