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 easy to find, and there were many different groups to join. 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 essential with any chronic illness, but more so with rare conditions.

Identifying misinformation in online support groups

However, the drawbacks include misinformation, abundant complaining/negativity, and one-upping each other on who has it worse off. While there is good information that one can glean from these types of groups, more often than not, information shared is either wholly incorrect or missing crucial details. To that end, I want to address some of the misinformation I've seen floating around these support 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 caused by an autoimmune disorder. An autoimmune condition is not something that can be cured. 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. Then, they suggest that other people try the same to eliminate their hives.

I can't tell you how much I wish there were a cure, but there 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 must be treated: by controlling the symptoms.

I just hate to see people chasing answers when there isn't one to be had. An autoimmune condition does not cause different types of chronic hives, 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 without explanation. 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 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 return, 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. It could be due to some change or supplement you added, but that's not 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 in the 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 the hives return with a vengeance as soon as you get off the steroids.

Identifying the potential harm

I know my articles are usually upbeat with quite a bit of humor, but I needed to address these issues, perhaps more for myself than anyone else. I hate to see people struggling unnecessarily, especially from all the misleading 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.