Living with CSU

CSU can last weeks or years but it can be managed. Read more about living with CSU.1

CSU patient Vicki Lawrence reading a book
CSU patient Vicki Lawrence washing dishes

CSU Management Plan

If your allergist determines that you have CSU, he or she will work with you to develop a condition management plan.

It’s important that you talk to your allergist and describe your symptoms, when they began, and anything that makes your symptoms better or worse. This can help your allergist create a personalized plan to manage your CSU.

Living with CSU

Watch Vicki and others share their experiences2 with chronic hives. Hear firsthand about their journeys from diagnosis to management.

(CIU, chronic idiopathic urticaria is also known as CSU, chronic spontaneous urticaria.) VICKI: Hi, everybody. Welcome. Let’s go around the room. Let’s talk about everything you eliminated trying to get rid of this yourself.

ROBERT: So I started eliminating uh, certain things out of my diet, which, it’s, it’s very hard to do to. To ya know, to try to take one thing out and see if that’s going to correct your problem. In my case, I just continued to live with it uh, for roughly about three years.

VICKI: So how long was it for you guys before you decided that you really needed to get some help?

MELINDA: I went to urgent care.

VICKI: Oh you did. Okay.

MELINDA: Yeah. And they just said, we don’t think it’s this and here’s a prescription for steroids and sent me on my way. And that helped for about five days and then symptoms started coming back. So I went to my primary care the following week and she just kind of suggested I might have to live with it, you know. She said, “It might be six days, it might be six months or six years. Who knows?”

VICKI: Donna, how long before you went to a doctor?

DONNA: I went about a month after my first breakout. I was still getting them off and on periodically. And I saw my primary care, who eventually after a couple of weeks with no resolve, sent me to an dermatologist and the dermatologist came in and he basically said, “I think it’s stress.”

VICKI: How did you feel when you actually got a diagnosis? Were you relieved? Were you angry? Were you…

JENNIFER: I actually felt empowered because at least now I knew that this existed.

VICKI: Mmhmm.

JENNIFER: Um, because I went through it for so long with nobody knowing and getting the same thing, “You’re just really stressed. Maybe you shouldn’t stress so much.” Or, “Let me give you a ton of medication that makes you totally sleepy that you can’t function.”

VICKI: What would be your advice to people that are just maybe finding us for the first time or just starting their journey?

DONNA: I would say for me, Vicki, that it’s just being persistent. Be your own advocate. See an allergist. In my case, that’s what changed my world. And felt like I’d come full circle and finally I had answers and they weren’t what I was expecting. But I, I was so relieved to have a diagnosis.

VICKI: It’s good for people to know there, there are other people that are out there that are going through this. Um, why are you now out here? I mean, I’m used to being out there, and, no big deal to me. What about you guys?

JENNIFER: If I can shorten that road between symptoms starting and diagnosis and treatment plan, that would be amazing because I would never want somebody to go through two years of it like I did. Six weeks of it, six months of it, six minutes of it, is almost unbearable because it’s, it’s awful.

VICKI: It’s been great talking with all of you. Thanks for coming. Thanks for sharing.

  1. Vicki Lawrence is compensated for her involvement as a spokesperson for the CSU and You campaign.
  2. These are real patients who were compensated for their involvement in the CSU and You campaign.

Hear from patients like you who are living with CSU.

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