474256 tn?1237989696

Anyone else still have Urticaria into adulthood?

I didn't really have a question...I just saw that there was a new Mastocytosis forum!  I just wanted to say hey!  I have Urticaria Pigmentosa.  It seems to be the kind that stays with you into adulthood.  I have a twin brother and he also has it but his has greatly decreased to where it's not even noticeable anymore.  Lucky him!  I just wondered if there are any others out there with Urticaria that still have it into their adulthood?  Thanks!
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Avatar universal
Hi Cate,
Just wanted to let you know that my husband also gets outbreaks of urticaria.  He is 57 and they just started a couple of years ago.  We have pretty much figured out what causes these outbreaks.  Sulfites and Sodium Benzoate are two of the main triggers.  Alot of shellfish are sprayed with sulfites.  Also dried fruits contain sulfites.  Try to avoid eating at salad bars because they spray the vegetables with sulfites to keep them fresher longer.  My husband recently had an outbreak because he ate too much soy sauce.  Soy Sauce contains Sodium Benzoate.  We have discovered we now have to read every label to make sure he isn't getting too much of these chemicals in his system.  Hope this helps you.
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Avatar universal
Hi, Jennifer and Jana!
Thanks for your help.  That is interesting about the sulfites.  I have often been tempted to try acupuncture, even though I am almost positive it wouldn't work.  It's 2009; I feel like there has to be something that can be done!  I wonder what would happen if a celebrity had this condition....surely they would make sure that a cure or some kind of treatment was found!
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Avatar universal
Figured I'd add my 2 cents.  I was diagnosed with UP as an infant and still have it.  Anything that I have read, did state that the majority of people with UP would find it disappearing by adulthood but I had always been aware there was a small chance it wouldn't go away.  My spots have not lessened, in fact I'm pretty sure I've picked up a few more over there years as well as having my symptoms worsen (they are not really bad... just more annoying).

I do have to admit that I have gotten used to the spots and rashing.  No one has asked me about my spots since elementary as the spots look like regular spots adults have... which makes it fun explaining to people "no really, mine are different than yours" lol.  And no one comments on the rashes either I think they just ignore it, only my family mentions it out of concern.
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Avatar universal
Hey everyone,
I am so happy I found this forum. I am 25 and was just diagnosed with Urticaria pigmentosa. I've had it for at least 7 or 8 years now, but had no idea what it was. I thought it was just darker melanin spots or something. Luckily, I don't have really huge outbreaks or anything. Sometimes after showering I get couple of hives on my legs. I have spots on my legs, belly and breasts. I can see them spreading and I hope they don't spread onto my face. The doctor told me they almost never spread to the face. Is that true?
She also told me that, since I was still considered a child when I was 18 (!), it might go away by itself. But to me it seems it is spreading every day, and I doubt it'll ever go away. I still need to learn how to live with it and and how to love my body the way it is, or even better the way it will become.
I read somewhere that the hives and the urticaria pigmentosa get worse when a person is under an emotional stress. Have any of you noticed that?
Do you use any treatment, like antihistamines?
I am so glad I found this forum. This is making me feel so much less lonely.
Helpful - 0
Avatar universal
Welcome to the Club!  

I am kinda surprised at your doctor considering you a 'child' still.  Most research I have seen was either childhood (first 5 years or so) and adulthood... the age you are at.  Everyone's symptoms and severity differs but it can be managed.  I have a few spots on my face, they are faint and are just there.

I have had this soooo long that honestly, I don't imagine not having it.  Not that it defines who I am but after so many years (I am 28 this year and was diagnosed as an infant) it is just is.

Unfortunatly, with everyone having slightly different symptoms, etc. I can tell you what happens to me and what works for me but cannot guarantee it will be the same for you.  

I have the following symptoms:
       - rashing (this happens daily and usually face and chest)
       - the spots itch (like mosquito bites, its better if you ignore the itch.. makes it  worse when you scratch, this is also regular)
       - hives (uncommon, maybe once a month if that)
       - chest pain, trouble breathing (very uncommon)
       - and I am sure I have other symptoms that are hard to tell if its other things or the disease.

I myself do not take regular antihistamines as I do not find the itching and rashing to be an issue.  I do carry benadryl as my emergency backup and it has come in handy a few times.  I do also keep an antihistamine in the house (Reactine, Aerius, etc.) just in case I know I will be exposed to something that will make me feel bad... preventative maitenance.  

I'm lucky, I rarely have serious reactions.  Scents such as perfumes, smudging, paint, any other sort of fumes are unfortunately a trigger for me.  Generally causes me to rash (flush) and get itchy.  Smudging though (burning sweetgrass) is my one serious reaction, trouble breathing, chest pains, hives, etc.  Seafood makes me rash... I still eat it in small portions (mmmm scallops and shrimp).  And then there are random triggers, yes emotions make me rash... nervous, stress, etc.  Sometimes I rash for no particular reason, maybe there was dust in the air, etc.

I recommend accepting the rashing and the spots (mind you I have no idea what your spots are like.. mine are just light brown and look like other people's beauty marks).

Some headaches... everytimes I see a new doctor, dentist, etc. I have to explain to them what I have... just cause it is that uncommon.  I have even brough research material to my doctor for him to look at.  I find most are interested in learning, any that I feel aren't taking me seriously (they don't have to panic but ... you shouldn't feel they are just nodding their head going 'uh huh, uh huh') I don't see again.  I also, don't let anyone inject me with anything unless I know what it is, just in case.

And now that I have completely rambled on I will stop.  I recommend looking into the Mastocytosis Society, they can provide you with more info as well and they double as a support group.
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1185128 tn?1264537308
Hello All, my name is Tif. I have a one year old little girl that at 5 months old, presented with some peculiar looking round to oval shaped pinkish brown spots on her torso and back with a welt or two on her legs and arms and neck- usually behind her ears that sometimes look like mosquito bites. These spots never fully go away, they become red and inflamed at times and begin to itch and then fade back to a light brownish color.  I took her to the pediatrician and he said he was not sure what it was, but it looked like some form of urticaria, but the larger flat round slightly raised pinkish brown spots threw him off- he said we will take a wait and see approach and instructed me to give her anti histamines like claritin for kids. I guess I'm grasping at straws here but I was wondering, does the description of symptoms I just listed above sound like anything you've dealt with? I have done hours of research on this and it seems like her symptoms match that of Urticaria Pigmentosa. I am very worried because I've seen some other conditions that sort of match up- not as much as U.P. but they could be serious and detrimental to her well being. If anyone could give some advice on this I would deeply appreciate it. Thanks in advance.  
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