Now 27, Fawn has no recollection of being diagnosed with guttate psoriasis at one and half years of age. “According to my mom, I had a really bad outbreak, but I don’t remember it at all!”
After this initial diagnosis, Fawn did not experience an outbreak for years. In fact, the rash did not return until she began college. “At first, I had only a few, small spots. But when I was 23, it rash developed quickly and spread all over my body.”
Fawn tried a number of different topical medications, but none provided adequate results. Her doctor went on to inject the rash with steroids. Although these injections worked, the results were short-lived, and the lesions recurred four weeks after treatment. Finally, she discovered phototherapy. Six months into treatment with UV light, her lesions cleared completely. Since then, she has experienced “a few spots” from time to time, without a significant outbreak.
We asked Fawn to talk to us in detail about her diagnosis, her thoughts on the different treatment modalities, and what it’s like to be a young female with psoriasis.
Q: What does psoriasis look and feel like to you?
A: The rashes are generally a bit red and very dry and flaky. The larger spots tend to be more flaky and less red, while the smaller ones are less flaky and darker red. Mostly it just feels like dry skin, but occasionally it is painful or itchy.
Q: How do you describe psoriasis to your friends and acquaintances who don’t know anything about it?
A: I usually try to keep it simple and tell them that it’s a skin problem that results in a lot of flaky patches on my skin. I also throw in that it’s not contagious and if people want more info then I go into more detail, like explaining that it’s sometimes itchy or painful, goes away but comes back from time to time, etc.
Q: Is this something that comes up often for you?
A: It usually only comes up if I am having a pretty bad outbreak or if I mention it, but it doesn’t come up all that often.
Q: Does anyone else in your family have psoriasis?
A: My uncle (on my mother’s side) also has psoriasis, but he has plaque psoriasis and I have guttate psoriasis. We’ve never really talked about it.
Q: How did your parents recognize what it was when you had your first outbreak in infancy?
A: I don’t remember the exact story, but I believe my mom took me to the doctor because she thought I had a bad rash. Then the doctor recognized it as psoriasis and according to my mother “prescribed something that cleared it right up”. I think it was a topical ointment, but I’m not sure!
Q: What bothered you the most when your psoriasis flared at the age of 23?
A: I would say it was probably appearance. I don’t remember it at all from the first time around, so I wasn’t really expecting it. I had had a few small patches of it over the years, but at 23 it suddenly appeared all over my body. It got particularly bad about a week before a wedding that I was in (with strapless dresses), so I spent most of that day having to explain to people what it was.
Q:Does anything in particular trigger your psoriasis?
A: I’m not sure exactly what triggers it, but stress seems to play a role. At times that I have extended periods of stress I seem to be more likely to have outbreaks. I also seem to be more likely to flare in the winter, which could be triggered by the colder, drier conditions, or less time in the sun.
Q: Does anything make it better?
A: The only thing that really seems to work is phototherapy. Sometimes a reduction in stress seems to help, but only with small flares.
Q: Do you currently treat the spots that appear from time to time?
A: I try topical ointments if I just have a few spots, but those usually don’t seem to work very well if it spreads beyond that.
Q: What did you like about phototherapy?
A: I liked that it was quick and didn’t leave me feeling sticky like the ointment all over my body did.
Q: Was there anything that you did not like?
A: Occasionally I would get burns (like a sunburn) from the phototherapy. This would occur if I was in the machine for too long or after returning to treatment after not being able to make a few appointments.
Q: What was your phototherapy regimen like?
A: After the bad flare at 23, I started going in 3 to 4 times a week (about every other day). I think I went for about 4 months before it all cleared up. Since then I’ve only gone back once and that was for about 2 months (the flare wasn’t as bad that time).
Q: Do you remember what some of the topical medications you tried were? Did you have any side effects from those medications?
A: I never had any side effects that I can recall. The only names that I can remember are clobetasol and betamethasone dipropionate. There were several other ointments that they thought might work better, but they were really expensive (like $400 a tube) and I couldn’t afford them because my insurance wouldn’t cover them.
Q: Did you have any side effects from the intralesional steroids
A: The shots themselves were incredibly painful and there was often residual pain for a few days afterwards. Aside from that, I had no side effects. The steroids were very helpful; they cleared up almost everything within a few days, but the effects only lasted for about a month.
Q: What advice would you give to someone with newly diagnosed psoriasis?
A: My main advice would be to do some research and make sure you have a doctor who is giving you all the options. My first few doctors were only willing to try ointments and when they didn’t work, they blamed me for not applying the ointments appropriately. I didn’t get results until I finally found a doctor who was willing to try other options.